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When it might not be dyslexia

Louise Selby, renowned dyslexia specialist, trainer, author, and teacher, has highlighted PANS and PANDAS in her latest book, All About Dyslexia: A Practical Guide for Primary Teachers. This inclusion sheds light on an important yet often overlooked issue: the sudden onset of writing changes as a potential symptom of PANS and PANDAS, which can sometimes lead to a misdiagnosis of dyslexia.

While a sudden change in writing skills in adults typically prompts medical investigation, similar changes in children are often dismissed as anxiety or due to increased demands in the classroom. Louise emphasises a critical distinction: dyslexia does not develop suddenly. For children experiencing writing changes due to PANS or PANDAS, this misinterpretation can delay appropriate support and intervention.

Please share with any educational and allied professionals and for more information on distinguishing dyslexia and the writing changes occurring in PANS and PANDAS go to https://louiseselbydyslexia.com/what-happened-to-evans-writing/

Children and young people can of course have more than one condition.

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When it might not be dyslexia - PANS PANDAS UK

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Welcome to PANS PANDAS' news blog. This post is titled: When it might not be dyslexia

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Psychology Direct article for EP's, Nov 2025

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Psychology Direct article for EP's, Nov 2025

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(Paediatric Acute-onset Neuropsychiatric Syndrome) and  (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are complex, post-infectious medical conditions that can profoundly affect a child's or young person's emotional, cognitive, and behavioural functioning.

Children and young people with PANS or PANDAS may experience a sudden and dramatic shift from thriving in school to struggling with a wide range of challenges. These can include the onset of obsessive thoughts and compulsive behaviours, tics, heightened anxiety, emotional regression, irritability, eating disturbances, and sleep difficulties. In some cases, severe and unexpected special educational needs may emerge.

Families often face extremely difficult experiences as they navigate the impact of these symptoms. A significant disconnect exists between the severity of what children and young people are going through and the limited recognition, inconsistent diagnosis, and lack of coordinated support available. Outdated perceptions and unclear clinical pathways further compound these challenges.

As awareness grows, Educational Psychologists (EPs) are increasingly encountering pupils with a diagnosis or suspected diagnosis of PANS or PANDAS. However, responses across educational and clinical settings remain variable and fragmented.

At Psychology Direct, we're committed to supporting Educational Psychologists with the knowledge and resources they need to understand the full spectrum of needs affecting children and young people. That commitment includes raising awareness of conditions that remain under-recognised within educational settings. We're pleased to share this guest blog from PANS PANDAS UK. This article aims to deepen professional understanding and inform educational practice by exploring the nature of PANS and PANDAS, and the implications for supporting affected children and young people within school settings.

What you might see in the classroom

Children and young people with PANS or PANDAS may experience sudden and dramatic changes in behaviour, cognition, and emotional regulation. These symptoms can fluctuate and may resemble traits commonly associated with neurodivergent profiles such as autism, or ADHD. However, PANS and PANDAS are distinct medical conditions that require specific clinical interventions, in addition to educational support.

Importantly, neurodivergent pupils can also develop PANS or PANDAS. This adds complexity to assessment and support, as it can be challenging to distinguish between a child or young person's established neurodevelopmental profile and new, acute medical symptoms. Without careful consideration, some children and young people may be misidentified or their evolving needs misunderstood, potentially delaying access to appropriate diagnosis and support.

More generally, the impact of PANS and PANDAS on special educational needs and disabilities (SEND) can be far-reaching. These conditions may trigger the sudden emergence of complex needs in pupils who previously required no additional support. The acute and often unpredictable nature of symptoms can fall outside established SEND profiles, making it essential for professionals to remain alert and advocate for flexible, responsive provision that adapts swiftly to changing presentations.

Meet Rosie

Rosie first experienced symptoms of PANS PANDAS at 14, with OCD thoughts and tics, and was diagnosed at 17 after glandular fever was found to be the trigger. School life became more challenging as fatigue, cognitive difficulties, and limited awareness from teachers and peers often left her feeling misunderstood, though her determination meant she maintained strong grades and attendance.

With flexible support at sixth form and a receptive University, Rosie was able to thrive academically and personally. She has just graduated with a BA (Hons) in Early Years Education, is currently training to be a Forest School Lead, and has been an integral member of the Education, Social Care and Health group, (ESCHG) a national multi-disciplinary and lived-experience team creating guidance for Local Authorities in England.

Rosie's journey highlights the crucial role of awareness, empathy, and flexibility in education, and serves as an inspiring reminder of the power of tailored support in enabling children and young people with PANS PANDAS to reach their full potential

'My journey through education is something I am very proud of. I have never let my condition get the better of me and I have always been determined to do the best I can. I have now completed a foundation degree in Early Education BA where I hope to work with children from the ages of 0-8. Also, although it took me a while, I was really proud when I passed my driving test!'

You can read the full story of Rosie Shared with the kind permission of Rosie and her family

The Role of Educational Psychologists

EPs play a pivotal role in identifying and supporting pupils with PANS and PANDAS. Given the episodic and unpredictable nature of these conditions, trauma-informed and flexible approaches are essential. EPs can:

Support schools in understanding symptom variability (e.g., handwriting regression , executive functioning difficulties, sensory sensitivities)

Promote inclusive strategies that accommodate fluctuating needs

Facilitate multidisciplinary team (MDT) collaboration across health and education

Key Takeaways for Educational Psychologists

To support effective practice, EPs are encouraged to:

Recognise the Medical Nature
Understand that PANS and PANDAS are post-infectious conditions with fluctuating emotional and cognitive impacts.

Adopt Trauma-Informed, Flexible Approaches
Tailor support to reflect symptom variability, including regression and sensory sensitivities.

Identify Red Flags and Support Referrals
Guide families and schools toward appropriate medical assessment and intervention.

Work Within an MDT Framework
Promote collaboration across health and education for coordinated care.

Build Sector Capacity
Lead training, contribute to research, and develop guidance to improve understanding and provision.

The Role of the PANS PANDAS UK Steering Group

As national attention around PANS and PANDAS has grown, the need for coordinated clinical care has become increasingly clear. In response, the PANS PANDAS Steering Group (PPSG), a multidisciplinary coalition of medical professionals was established to address the urgent need for coordinated national action and to drive consistency across services. The Steering Group now guides key developments, including:

Research priorities and incidence tracking

Development of Local Authority guidance (expected in 2026)

A forthcoming clinical service specification

Clinical guidelines endorsed by the Royal College of Paediatrics and Child Health (RCPCH), expected in 2026

In the interim, the PPSG strongly recommends a Multidisciplinary Team (MDT) approach to the assessment and treatment of children and young people presenting with acute-onset neuropsychiatric symptoms. This collaborative model ensures that complex cases are reviewed across specialties and that care is not delayed due to the absence of a formal MDT service.

To support clinicians, the PPSG signposts two sets of international peer-reviewed clinical guidelines, The Journal of Child and Adolescent Psychopharmacology (JCAP) 2017 Guidelines and The Nordic Guidelines (2021)

Together, these initiatives aim to create a coherent, evidence-based framework for diagnosis and support across the UK, helping to bridge the gap between clinical understanding and educational practice. Alongside these national clinical developments, further work has focused on supporting Local Authorities to navigate this evolving area and clarify their responsibilities in practice.

The Local Authority

In January 2025, recognising that many Local Authorities were navigating a rapidly evolving landscape around these medical conditions, the charity PANS PANDAS UK, issued a  Local Authority Update. This was developed as an interim measure to support professionals.

The update was shared with all Local Authorities in England and aimed to:

Clarify that PANS and PANDAS are recognised medical conditions

Encourage professionals in education, health, and social care to access training and utilise available resources

Highlight legal responsibilities

Reference recent legal developments, including a High Court Judicial Review, including a diagnosis of PANS.

The update acknowledged the complex and evolving nature of the conditions and the systems surrounding them and sought to provide clarity and direction while formal clinical and educational guidance is still in development.

About PANS PANDAS UK

is a nationally recognised charity dedicated to improving recognition, diagnosis, and support for children and young people affected by these conditions. Established in 2018 by a group of dedicated parents/caregivers, the charity now plays a strategic role in shaping national policy and practice across health, education, and government. Its work includes:

Facilitating and supporting the work of the PANS PANDAS Steering Group (PPSG)

Delivering professional training

Engaging with Parliament through the PANS PANDAS All-Party Parliamentary Group (APPG)

Promoting the voice of lived experience through initiatives such as the Youth Advisory Board

The charity's cross-sector approach ensures that the voices of affected families and young people remain central to planning and support.

Further Learning

We're proud to partner with PANS PANDAS UK to raise awareness among Educational Psychologists and to provide practical resources that strengthen practice. To further raise awareness, PANS PANDAS UK will be participating in an upcoming podcast. Supporting all children and young people, particularly those with complex and under-recognised needs, is at the heart of what we do. Thank you to PANS PANDAS UK for helping us strengthen that support.

Resources

Free CPD accredited online training for teachers and educational psychologists- https://panspandasuk.org/training/

PANS PANDAS UK - Further Education Resources

Ask the Educational psychologist- A series of recorded education Q and A tailored for parents/caregivers- with many thanks to the educational psychologist Dr Joanne Riordan- https://panspandasuk.org/ask-the-educational-psychologist/

Engagement with The Department for Health and Social Care (DHSC) and the Department for Education (DfE)- https://panspandasuk.org/support-resources/pans-pandas-all-party-parliamentary-group/

MIMS CPD accredited online 0.5hr Learning Module for all health professionals
https://panspandasuk.org/wp-content/uploads/2024/11/Training-Modules-in-Health-and-Education-Transforming-Support-for-PANS-and-PANDAS-Flyer-A5.pdf

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Understanding PANS and PANDAS: A Guide for Educational Psychologists - Psychology Direct

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PANS and PANDAS are conditions causing sudden behavioural and cognitive changes in children. This guide for Educational Psychologists explores recognition, assessment, and practical support strategies for affected pupils.

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Edpsy blog: Understanding PANS and PANDAS (October 2025)

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Edpsy blog: Understanding PANS and PANDAS (October 2025)

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PANS and PANDAS: emerging understandings - edpsy.org.uk

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Each year, October 9th marks PANS PANDAS Awareness Day, time to reflect, raise awareness, and deepen our understanding of two complex and often misunderstood medical conditions. Building on last year’s ... PANS and PANDAS: emerging understandings

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PANS PANDAS UK is delighted to share that a training module on PANS and PANDAS is now available on the Medical Needs in Schools (MNIS) platform. This resource is accessible to schools and professionals across Oxfordshire, Northamptonshire, and Leicestershire.

The MNIS project is a collaborative initiative between Oxfordshire Hospital School and Children's Psychological Medicine. It is designed to support schools in effectively managing the educational, social, and psychological needs of children with medical conditions.

This module aims to equip school staff and allied professionals with the knowledge and tools needed to better understand and support children affected by PANS and PANDAS.

We encourage our community to signpost schools, school nurses, SENCOs, and relevant professionals to the MNIS platform to log in and access this training: https://medicalneedsinschools.co.uk

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Medical Needs In Schools - PANS PANDAS UK

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Welcome to PANS PANDAS' news blog. This post is titled: Medical Needs In Schools

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Including Learners with Medical Needs in Schools: Edited by Cath Kitchen

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Including Learners with Medical Needs in Schools: Edited by Cath Kitchen

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Welcome to PANS PANDAS’ news blog. This post is titled: Including all learners

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Ask the Educational Psychologist - PANS PANDAS UK

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Welcome to PANS PANDAS UK. This is our Ask the Educational Psychologist page.

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SEN Magazine Article: PANS and PANDAS (Dec 2025)

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SEN Magazine Article: PANS and PANDAS (Dec 2025)

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Issue 139 ● November December 2025 | SEN Magazine

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In this issue: dance, dyslexia’s ripple effect, teacher assumptions, embedding life skills, child-parent abuse, PANS and PANDAS, micro interventions, autistic cognition, polytropism bias, empathy and autism, DLA, PMLD, mobility, relaxed performances, creative arts, music, cyberbullying, sensory clothing, safe spaces, books, products and services, what’s new, CPD and events, resources and much more

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A 45 minute recorded teacher training session on PANS or PANDAS

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A 45 minute recorded teacher training session on PANS or PANDAS

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Twilight Talk: Supporting Children and Young People with PANS and PANDAS in Educational Settings

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In this talk Tina Coope from the charity PANS PANDAS UK will discuss: What are PANS and PANDAS? How do the conditions impact on children and young people in the classroom? How can schools begin to provide support?

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SNJ is 17 years old this month, and in that time we've seen many developments in children's health, including new conditions, diagnostic changes (see the disappearance of Asperger's syndrome in favour of autism, and the growth of pathological demand avoidance for example), the arrival of Long Covid, and a growing awareness of rare diseases. How health conditions impact children's behaviour, development and learning is also rapidly evolving-especially how a child's educational support needs increase as a result of what might at first seem to be just a health issue.

One condition we're hearing more about is PANS/PANDAS. A lack of research data means it isn't included on the NHS website, but work is being done to develop resources and support. Tina Coope, Education Lead for the charity, PANS PANDAS UK. She's written 10 things you probably don't know about the condition

All about PANS PANDAS and 10 things you aren't likely to know....by Tina Coope, Pans Pandas UK

PANS - Paediatric Acute-onset Neuropsychiatric Syndrome

PANDAS - Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections

"PANS and PANDAS are conditions that affect the brain. People with PANS or PANDAS experience a variety of symptoms ranging from mental health symptoms to changes in behaviour and difficulties with movement."

Awareness of the post-infectious conditions of PANS and PANDAS is slowly growing. This medical condition is being reported by thousands of families to affect their children and young people, often puzzling and dividing both families and professionals. Children and young people with PANS or PANDAS can develop SEND without any prior evidence of need, often really struggle to attend school, and the conditions can often be misdiagnosed as purely mental health conditions, neurodivergence or other conditions.

My name is Tina Coope and I'm the Education Lead for the charity PANS PANDAS UK. Special Needs Jungle has kindly offered me the opportunity to raise much-needed awareness of these potentially devastating, but treatable medical conditions. Here are 10 key points that I think will provide a helpful overview, starting with the basics about what these conditions entail.

1. What are PANS or PANDAS?

In simple terms PANS and PANDAS are post-infectious conditions that affect both physical and mental health. They can be triggered by common infections like strep throat, chickenpox, or flu and can only be diagnosed by a medical professional. Some children and young people have developed PANS following Covid-19. The underlying cause of PANS and PANDAS is suspected to be an abnormal immune and/or inflammatory response.

While PANDAS is a paediatric diagnosis, (onset typically between the ages of three and 12), PANS can also occur in adults, and symptoms do not necessarily resolve at 16. PANS and PANDAS are relapsing and remitting conditions (the symptoms go up and down) and an exacerbation of symptoms is known in layperson's terms as a "flare".

The symptoms can be wide-ranging and variable and can impact lots of different areas of a child or young person's life. Signs can include the abrupt onset of OCD, tics, disordered eating, learning difficulties, sensory needs, and a deterioration in handwriting. Children and young people do not have to develop all of the symptoms.

2. An infection can cause the development of psychiatric and physical symptoms in children and young people.

Sadly, this is so little known: When a child or young person develops the sudden onset of a wide scope of symptoms such as Obsessive Compulsive Disorder (OCD), disordered eating, severe anxiety (including separation anxiety), sensory needs and learning challenges, it is not typically on any professional's radar to ask about a recent history of infections.

3. Claims the conditions are "controversial" have been debunked and superseded.

Until relatively recently, the conditions used to be perceived as controversial, but events have quickly evolved. In a Parliamentary debate in Autumn 2023, Maria Caulfield, then Parliamentary Under Secretary of State for Health, stated both PANS and PANDAS were recognised as discrete diseases by the NHS. PANDAS is also included in the World Health Organisation (WHO) International Classification of Diseases (ICD 11) with two codes. A huge amount of work is taking place in the background across the areas of health, social care and education.

As part of these efforts, the PANS PANDAS Steering Group (PPSG) was established in late 2022 to support the diagnosis and treatment of children and young people with these conditions. It includes representatives from the charity PANS PANDAS UK and multiple Royal Colleges, such as the Royal College of Paediatrics and Child Health (RCPCH) and the British Paediatric Neurological Association (BPNA).

Under the umbrella of the PPSG, four working groups have been established: a research group, a clinical guideline development group, a service specification group, and an education, social care, and health group. This last group is currently developing guidance for local authorities.

With Royal College of Paediatrics and Child Health (RCPCH) endorsed clinical guidelines set to be issued within the next 12 months, it's crucial professionals can access further resources, information and training on the conditions. A free short online CPD-accredited MIMS online health training module and teacher and educational psychology training are both currently available.

4. PANS and PANDAS can potentially be misdiagnosed.

Families report that individuals struggle currently to access a diagnosis of PANS or PANDAS. They might receive several different diagnoses or one that does not fully explain their symptoms. In the UK currently, many doctors are not trained to recognise PANS and PANDAS, so they might not be able to consider these diagnoses. The symptoms can also look like other conditions and/or neurodivergence such as OCD, autism, ADHD, dyslexia, dyscalculia and anxiety.

Some symptoms of PANS and PANDAS may overlap with neurodivergent traits, making these conditions harder to identify. Neurodivergent individuals need to receive a medical evaluation if PANS or PANDAS is suspected, and there is an acute, marked or distressing change. Some experts believe that autistic individuals might be at greater risk of developing these conditions, and more research is needed.

5. There are low levels of awareness about the conditions across health, education and social care.

Outdated but persistent views that the conditions are controversial, the lack of UK guidelines and the scarcity of professional knowledge and training resources available, are all contributing to insufficient awareness across the board of professionals. Many families currently report a lack of diagnosis, tailored treatment and support for their children and young people.

A Recent High Court Judicial Review covered by Special Needs Jungle found a local authority failed to provide the special educational support (section F) required in a child's EHCP (Education Health and Care Plan) EOTAS package who had a diagnosis of PANS (alongside ADHD and autism) and reaffirms that LAs are under 'absolute duty' to secure special education provision.

A recent update on the status of PANS and PANDAS has been sent out across all of the councils in England, including the key message that the conditions are recognised by the NHS.

6. The limitations of assessments

One of the unusual characteristics of PANS or PANDAS includes the variability and pattern of the symptoms. Unlike many other conditions where symptoms may either remain stable or have a more predictable pattern of flare-ups, the signs of PANS and PANDAS can cover a large scop. These can range, for example, from eating restrictions to changes in working memory to a deterioration in fine or gross motor skills. Such a potentially wide range of needs can be challenging to identify.

With each subsequent flare, children and young people can either experience similar signs as with their previous flare, or a range of new symptoms. Flares can also change a lot in how severe they are, how long they last and how well a child or young person recovers. If professionals undertaking assessments are unaware of this, needs can easily be either under- or over-estimated and temporary needs can be incorrectly assumed as chronic.

7. How common is PANS / PANDAS? Incidence figures (or lack thereof)

There are no UK-based figures for how many children and young people have PANS or PANDAS. A lack of incidence figures does not mean children and young people are not potentially developing these conditions in significant numbers. The charity PANS PANDAS UK is currently supporting around 7,000 families reporting the onset of neuropsychiatric symptoms in their children and young people. The potential scale of the issue is such that the PANS PANDAS Steering Group recently submitted an application for a UK-wide surveillance study to BPSU (British Paediatric Surveillance Unit) and CAPSS (Child and Adolescent Psychiatry Surveillance System).

8. Psychological impacts of PANS and PANDAS are often not recognised.

Children and young people with PANS and PANDAS often experience significant changes in their functioning and are typically aware of these changes. Due to current limited awareness, they often do not receive an explanation for what is happening to them or why. This lack of understanding is often accompanied by a lack of treatment to alleviate their symptoms.

Families may quickly find themselves supporting a child or young person who is unable to attend school and who requires extensive support both at home and school. As a result, parents and caregivers often need to rapidly adapt their own lives and unexpectedly navigate both the SEND and health system.

9. Families supporting children and young people with PANS and PANDAS can be vulnerable to false accusations of Fabricated Induced Illness. (FII)

There are several context-specific factors leading to disproportionate numbers of families supporting children and young people with PANS or PANDAS being accused of f abricated or induced illness.

These include, but are not limited to:

a lack of professional awareness of the conditions,

some of the symptoms themselves can mimic warning signs in safeguarding,

a child or young person may mask or partially mask their symptoms in school or during a medical consultation so families and professionals may have very different perspectives on the scope and severity of needs.

Parents/caregivers often also need to seek multiple medical opinions to gain a diagnosis and treatment, which can seem to be a further "red flag".

While adhering to safeguarding legislation/guidance is of course crucial and applicable to all groups, the issue of FII has been so significant in the PANS and PANDAS community that the charity PANS PANDAS UK, in conjunction with the independent social worker Cathie Long, has produced a guide for social work, healthcare and education professionals.

10. There is a lack of UK-led research into the educational impacts of PANS and PANDAS

Many families supporting children and young people with PANS or PANDAS report feeling stuck and isolated. There is a lack of UK-based educational research, and only a handful of universities and Initial Teacher Training (ITT) programs include these conditions in their curricula. Many SEND organisations are unaware of these conditions, and specialist knowledge, training, and educational resources are limited.

'I wish teachers knew about PANS and PANDAS, none of them knew about it'
(Millie age 15 with PANDAS)

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Also read:

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10 things you probably don't know about the emerging neuropsychiatric conditions of PANS and PANDAS - Special Needs Jungle

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We bring you 10 things you probably don't know about the emerging neuropsychiatric conditions of PANS and PANDAS

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PANS and PANDAS: Supporting affected pupils - SecEd

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PANS and PANDAS infections can cause the development of psychiatric and physical symptoms in children and young people

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PANS and PANDAS: Supporting affected pupils - Headteacher Update

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PANS and PANDAS infections can cause the development of psychiatric and physical symptoms in children and young people

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Understanding PANS and PANDAS - edpsy.org.uk

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When a child or young person develops PANS or PANDAS, it can be challenging and isolating. For families, the situation…

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PANS (Paediatric Acute-Onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) | Information & support | Contact

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Your questions about [insert condition name] answered – plus advice and support for those diagnosed with the condition and their families.

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Education expert Tina Coope from PANS/PANDAS UK

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Podcast Episode · PANS/PANDAS STORIES · 14/11/2024 · 30m

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One of the best way you can empower yourself, and the young person in your life, is by learning everything you can about OCD. It's also by finding out what support is available, and what resources are out there that your young person can access. You can find some ideas here.

Please remember than neither you nor your young person are alone in this process, there is ALWAYS someone to contact. It's just about knowing who.

Before reading through the following I just want to mention a few important things :

Some of these resources are aimed at children and some are designed to be used for children alongside an adult. Others are designed to be read by you alone so you can know how to support your young person the best you can. Whatever the resource is, and despite who it is aimed at, please take a good look through it first before sharing any of it with your young person and use discretion to decide what is suitable. Some books can be triggering for young people with OCD.

PANS/PANDAS is a neuropsychiatric condition which is triggered by a misdirected immune response to a variety of triggers - it can cause a sudden onset of OCD symptoms. PANDAS is very similar but is triggered by Streptococcal infection. It is really important parents/carers read about this if there was been a sudden onset of OCD symptoms. Contact information below.

OCD Action is the national charity focusing on Obsessive Compulsive Disorder (OCD).

They are a fabulous London-based charity - their support is nation wide. Check out their website to hear about all the wonderful help and support they can give you.

​

Run by the amazing Ashley Fulwood with help from a brilliant range of volunteers and his side kick Sue Millichap. Based in Derby but again nation-wide. Rather excitingly, OCD-UK has just expanded and appointed Sue as Children and Young Peoples Lead. There is loads of information on this, and a wide range other things, on their website. They are always on the look out for volunteers and Young Ambassadors as well if you fancy getting involved.

​

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Children and young people | taming-olivia | OCD | UK

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Signposts to support and resources for young people with OCD. Books. Podcasts. Charity links.

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NASEN Connect Article : PANS and PANDAS: May 2024

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NASEN Connect Article : PANS and PANDAS: May 2024

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nasen Connect Summer Term 2024 - Issue 44

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Read nasen Connect Summer Term 2024 - Issue 44 by nasenCONNECT on Issuu and browse thousands of other publications on our platform. Start here!

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Hearing the voice of children and young people https://youtu.be/WmkuLQQjCTI

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Hearing the voice of children and young people https://youtu.be/WmkuLQQjCTI

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Home and School. Spotting the early signs of PANS or PANDAS

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Home and School. Spotting the early signs of PANS or PANDAS

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Podcast episode with Emilia Metzel hosted by Dr Megan Hofmann and Vicky Queralt from Little Journey

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Podcast episode with Emilia Metzel hosted by Dr Megan Hofmann and Vicky Queralt from Little Journey

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Emilia’s Journey: PANS/PANDAS Diagnoses – Getting Answers For Her Twins | Spotlight Sessions Ep4

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Louise Selby's Blog- What happened to Evan's writing?

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Louise Selby's Blog- What happened to Evan's writing?

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https://louiseselbydyslexia.com/what-happened-to-evans-writing/

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Tina Coope is the Education lead at PANS PANDAS UK, working to raise awareness of the conditions amongst educators and to support the development of effective practice. She has written multiple education resources about the conditions and has created the first teacher training presentation in the UK.
What are PANS and PANDAS?

PANS and PANDAS are post-infectious, autoimmune/inflammatory medical conditions which affect both physical and mental health. Typically relapsing and remitting they can be triggered by common infections (for example, strep throat, chickenpox, or covid-19). Much of the focus has been on children and onset usually happens between three and 13 years, but PANS can also affect adults and t he conditions do not just disappear at 16. An exacerbation of neuro-psychiatric symptoms post infection is known colloquially as a 'flare.'

PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)

PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

Children/young people with PANS and PANDAS can quickly change from thriving in school to developing a broad range of symptoms including:

extreme obsessive-compulsive behaviours

motor and vocal tics

severe generalised and separation anxiety

behavioural regression

sensory needs

emotional regulation issues

restricted food intake

sleep disturbance

urinary problems

development of learning difficulties.

Not all children/young people will have every symptom. The severity of the symptoms can also vary greatly across individuals, and within the same child/young person at different stages of the condition.

When education professionals hear about PANS and PANDAS, a typical response is often either a blank look or a wry glance, coupled with a reference to the controversial label that has historically surrounded these conditions.

This reaction is not at all surprising given past medical debates around the diagnosis and classification of PANS and PANDAS. Compounding the issue further is the fact that most educators are unfamiliar with the conditions, and that the ever-changing symptoms of PANS and PANDAS can easily be mistaken for poor parenting, neurodevelopmental conditions or alerting signs of safeguarding issues. Historical challenges accessing a diagnosis on the NHS have also led to many families seeking private health care* which has on the ground been problematic in some schools.

This situation has often left families supporting children/young people with PANS/PANDAS caught in a complex web. Frequently stuck between health services, and with the root causes of their child's/young person's symptoms in schools both under-estimated and misinterpreted.

Parent/caregivers of a children/young people with PANS or PANDAS

The medical picture of PANS and PANDAS

The UK landscape around PANS and PANDAS is now rapidly evolving. Within the last twelve months, there have been several significant developments. These include the formation of the PANS PANDAS Steering Group (PPSG) with representation from multiple Royal Colleges, [1] alongside the explicit acknowledgement of both PANS and PANDAS as discrete diseases recognised by the NHS.

PANS PANDAS Steering Group/February 2023

PANDAS also has designated WHO ICD-11 codes 8E4A.0 and 8AO5.10, highlighting its recognition as a distinct disorder. Notably information about PANS and PANDAS is now also included on the British Paediatric Neurological Association (BPNA), the Royal College of Occupational Therapists (RCOT) and the Royal College of Nursing. (RCN) websites.

The PPSG research sub-group have also recently completed an application for a UK wide surveillance study to gather incidence data. Additionally, a consensus sub- group will engage professionals from all relevant fields to agree interim management guidelines. These will be put in place until sufficient research is in place to apply for NICE guidelines. A collaboration involving representatives across social care, health and education has also led to the formation of a further sub group. Their goal is to produce information on the conditions to be distributed across Local Authorities.

Schools

Where does that leave children/young people with PANS and PANDAS in education?

Schools are increasingly encountering children/young people with these diagnoses in their settings, and these numbers are expected to increase. Whilst the medical community advances efforts to delineate pathways for diagnosis and treatment, the growing numbers of diagnosed children/young people in educational settings need support now.

The current situation is challenging to say the very least. Parents/caregivers are reporting a wealth of difficulties going right back to the basics, i.e. having their child's/young person's diagnosis accepted by schools and Local Authorities. On top of that often comes parent blame and frustratingly inaccurate assessments and interpretation of the child's needs.

In 'straightforward' cases, PANS and PANDAS differ from developmental conditions in their often-rapid onset and the lack of emerging signs of difficulties. Children/young people can unexpectedly develop SEND that are wide ranging. Often the initial focus is on the most 'dramatic' symptoms such as the sudden onset of severe anxiety or physical signs such as tics. This weighted picture is then presented to further professionals which is unhelpful at best and contributing to misdiagnosis at worst. The key principle of giving due attention to all new impairments is being hampered by a lack of training and educational awareness of PANS and PANDAS.

Equally challenging is the often-dramatic waxing and waning presentation of children/young people. If the fluctuating trajectory of symptoms is not recognised as transient, this can have far reaching implications for a child. Families have reported that their child or young person with PANS/PANDAS has been permanently placed in specialised provision based on the outcomes from assessments at the height of a 'flare.'

Families trying to explain the 'change' in their child/young person to professionals has also been fraught with difficulties. Parents/caregivers have been told that their child/young person is now suddenly autistic or has ADHD, and that they just didn't notice the early signs. Other children are diagnosed with dyslexia, when earlier writing samples, school and parental reports document a child who had been exceeding expectations. Children/young people can of course have co-occurring conditions, but the importance of tracking an accurate time-line cannot be overestimated.

If families persist with the narrative of a 'change', professionals often begin to question parent/carers to suggest that they are struggling to come to terms with a particular diagnosis. Over time no professional has ever seen the child/young person present any differently. A pre-onset baseline has seldom been explicitly documented, and rarely has the child/young person been assessed following a flare to ensure that any impairment in skills have resolved. Some children/young people with PANS/PANDAS are losing their baselines and this is largely going unacknowledged. Conversely once diagnosed and effectively treated, children/young people with PANS/PANDAS can also improve dramatically including in the areas of cognition and learning.

Research

The educational consequences for these children/young people in the current climate are stark.

PANS PANDAS UK undertook a survey in 2022[2] whereby they questioned 217 parent/carers of children/young people with suspected or diagnosed PANS/PANDAS and found the following results in academic progress. The figures speak for themselves.

Predictably PANS and PANDAS also significantly affect children's/young people's ability to attend school. Intriguingly families noted that even during remission, their children/young people continue to grapple with attendance challenges long term. Despite the current focus on poor attendance levels following the Covid 19 lockdowns, it is noteworthy that few professionals are considering post-infectious disorders such as PANS as one differential to consider.

Clearly more education research is needed to underpin the factors driving this emerging data picture. School-based trauma is also frequently reported by children/young people with PANS/PANDAS who have sat in a classroom whilst hallucinating or enduring multiple often under-estimated horrific symptoms. The current situation is creating exactly the opposite of what we are all trying to achieve, happy and healthy children/young people who are thriving in education and feel psychologically safe and supported in schools.

Children/young people with PANS/PANDAS

Hope for Children and Young People with PANS and PANDAS

There are however glimmers of change. The first UK universities are in the process of including the conditions in their core teacher training curriculum. There are a growing number of education resources available and the charity PANS PANDAS UK (PPUK) is now listed on more than 100 Local offer sites.

PPUK have now also delivered education training to more than 1000 professionals and families. Common themes of reflective feedback include 'all of those children that I think I have missed', 'I think this is the missing piece of a child/young person who we have been struggling to support' or even, 'we have a member of our own family who has really been struggling and I think it might be this...' .

The need for further educational research, integrated approaches between services and discussions on how children/young people with PANS/PANDAS are supported to access education needs to be firmly on the agenda. Needless to say, the role of educational psychologists is pivotal. The scale of this issue will not become fully apparent until we have a better idea of the incidence figures. What is abundantly clear, however, is that those children/young people who are suffering now cannot wait. Their childhood and education matters too.

Free teacher training sessions available via Eventbrite -

Wednesday 7th February - 4-5.15 pm
https://www.eventbrite.co.uk/e/supporting-children-with-pans-or-pandas-in-educational-settings-tickets-806323123167?aff=oddtdtcreator
Monday 26th February - 4-5.15pm

https://www.eventbrite.co.uk/e/supporting-children-with-pans-or-pandas-in-educational-settings-tickets-806366522977?aff=oddtdtcreator

Further Signposting

Medical and education resources - PANS PANDAS UK website - https://www.panspandasuk.org

House of Commons debate Pack - 8 th September 2023 - https://researchbriefings.files.parliament.uk/documents/CDP-2023-0174/CDP-2023-0174.pdf

PANS and PANDAS trauma resources - Dr Naomi Fisher - https://www.panspandasuk.org/trauma

EBSA resource from Sarah Johnson (including PANDAS) - https://www.phoenixeducationconsultancy.com/_files/ugd/bbe3de_7aad6df8df5f4bb89b1ef696f6a75fa0.pdf

Twinkl - * New * TeachMeet Reflections - Supporting Children with PANS or PANDAS in Educational Settings - https://www.twinkl.co.uk/resource/teachmeet-supporting-children-with-pans-or-pandas-in-educational-settings-t-cpd-1701699353

For any further information please contact Tina Coope - [email protected] .

References

[1] Established late in 2022, the PANS PANDAS Working Group (known going forward as the PANS PANDAS Steering Group or PPSG) was convened to address the variation in care available to children and young people presenting with symptoms of PANS and PANDAS. The PPSG has representation from the following organisations:

British Paediatric Neurology Association, PANS PANDAS UK, the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of Nursing, the Royal College of Occupational Therapy, the British Paediatric Allergy, Infection and Immunology Group, The Royal College of General Practitioners and the British Association of Social Workers.

*(There is no case in law for schools to not accept a private diagnosis purely on the basis that it from an independent clinician.)

[2] PANS PANDAS UK 2022 Safeguarding survey found that children declined in their academic performance and attendance levels. This was a survey based on parent//carer reporting. No distinction were made between children with a formal diagnosis or suspected PANS or PANDAS. Neither was the variable of treatment included.

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Tina Coope is the Education lead at PANS PANDAS UK, working to raise awareness of the conditions amongst educators and to support the development of effective practice. She has written multiple education resources about the conditions and has created the first teacher training presentation in the UK

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Scotland- Attendance and PANS and PANDAS

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Scotland- Attendance and PANS and PANDAS

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School Anxiety: Is it all down to Mental Health? -Gillian Mathewson - Reform Scotland

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The release of Reform Scotland’s paper ‘Absent Minds: Attendance and Absence in Scotland’s Schools’ in October 2023 brought with it some difficult to hear

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Statement from the Royal College of Nursing ( RCN) on PANS and PANDAS 

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Statement from the Royal College of Nursing ( RCN) on PANS and PANDAS 

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https://www.rcn.org.uk/news-and-events/Blogs/pans-pandas-a-mysterious-and-debilitating-paediatric-disorder-180523

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Interactive TeachMeet Reflections. Links to further resources on PANS and PANDAS from Twinkl.

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Interactive TeachMeet Reflections. Links to further resources on PANS and PANDAS from Twinkl.

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https://www.twinkl.co.uk/resource/teachmeet-supporting-children-with-pans-or-pandas-in-educational-settings-t-cpd-1701699353

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TeachMeet Reflections - Supporting Children with PANS or PANDAS in Educational Settings

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Twinkl CPD creates clear, helpful guidance for teachers on curriculum objectives across key stage one and key stage two as well as inclusion, pedagogy, and career support. This interactive TeachMeet Reflections - Supporting Children with PANS or PANDAS in Educational Settings resource has been created to allow easy access to all the links we shared during our recent TeachMeet session with Twinkl CPD.

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In September 2012, I broke down in the school playground. I didn't know why, except for the fact that I was scared and that there were thoughts that made my stomach churn, floating around in my head. I had had increasingly terrifying thoughts the week before and on that day, they hit their climax. My friends, young and naïve just like myself (we were only 11 at the time), crowded around me. Hugged me. Promised me it would be okay. I still remember seeing out of the corner of my eye the panic that they showed after I had confided what my thoughts were saying.

They did what any child would. They said, "Let's go and get a teacher."

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Developing OCD after an infection: my mental health journey

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In September 2012, I broke down in the school playground. I didn't know why, except for the fact that I was scared and that there were thoughts that made my stomach churn, floating around in my head. I had had increasingly terrifying thoughts the week before and on that day, they hit their climax.

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Statement from the Royal College of Occupational Therapists (RCOT) on PANS and PANDAS 

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Statement from the Royal College of Occupational Therapists (RCOT) on PANS and PANDAS 

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https://www.rcot.co.uk/pans-pandas-standards-care?hash=SdBkhwCdIcYTK5GuOiIRTNU5uIsaP_gBmKDpu9loVdo&dm_i=6Q9X,R0MJ,3ILO6M,3D0DW,1

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Episode 6 - Dr Tim Ubhi explains how to treat PANS/PANDAS

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Podcast Episode · PANS/PANDAS STORIES · 13/11/2023 · 57m

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Supporting PANS PANDAS parents with top US therapist Julie Cox

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Podcast Episode · PANS/PANDAS STORIES · 05/09/2024 · 38m

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A resource for health professionals. The impact of PANS and PANDAS on education.

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A resource for health professionals. The impact of PANS and PANDAS on education.

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UK resource written by Dr Ffion Jones about the experience of PANS and PANDAS from a CYPs perspective

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UK resource written by Dr Ffion Jones about the experience of PANS and PANDAS from a CYPs perspective

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Imagine what it is like to wake up one morning and you are completely lost. You're still in your room, and everything around you looks the same, but your whole world has changed. You're no longer you. And this new world, and the new you, is scary, confusing, and is trying to hurt you. Welcome to my world. And the world of PANS.

I'm Sam and I'm going to tell you my story of PANDAS.

First, let me tell you about the "me" before PANDAS. I always wanted to be a famous writer or a famous footballer. I wasn't sure which but I was sure about the "famous" part! I live with my mum, dad, and little brother Sonny, who is two years below me in school. I used to love school and had loads of friends. They used to call me "Smiley Sam" because I was always happy and joking around . . . until PANDAS happened. I wasn't so "Smiley Sam" for a while after that.

Life was pretty normal until PANDAS. Then, two years ago, everything changed. It all started with a sore throat that lasted a few days. I didn't think anything of it - everyone gets sore throats! Mum took me to the doctors anyway - "better safe than sorry" she always says. They did a swab test and the doctor told me I had strep throat. "Nothing to worry about," he said. And we really weren't worried to begin with. That changed a few weeks later.

I still had a bit of a sore throat but I felt OK. Then, overnight, everything changed - and, the worst thing was, we didn't know why. As soon as I woke up, it was like I'd been hit by a thick fog that I couldn't find my way out of. Sometimes, when you wake up after a nightmare, you still feel bad for a moment because you're not quite awake. When you have PANDAS, you're trapped in that nightmare and you can't escape from it. It's like a panic attack that doesn't go away.

I was glued to the bed because the scariest thoughts, that I'd never had before, started firing at me like bullets. I was too scared to move. My whole body didn't feel like mine. I was blinking so fast I could hardly see and my mouth kept moving in strange ways. It was completely out of my control. I screamed so loud my ears popped. Mum came rushing in and I clung on to her tightly, my nails digging into my palms. My chest was so tight that I had to cling onto her for dear life. I was scared to let her go.

Dad took Sonny to school and I sat there for hours, mum trying to calm me down. Even though she was speaking normally, her voice sounded so loud that it made my head throb. This new world was so scary that I couldn't

stop screaming. "Make it stop!" I begged mum. I had gone to sleep as Smiley Sam and I'd woken up a completely different Sam altogether. Welcome to the new me - the screaming, stressed Sam.

Over the next few weeks, my strange symptoms got worse. I couldn't eat anything because I thought food would make me sick - it was not safe and full of germs. My body kept moving in weird ways and I'd make loud clicking noises that I couldn't control. At first Sonny thought it was funny but then he started getting worried too. I guess it's a bit scary having one brother one day and then waking up to a completely different one - especially when the new one isn't very nice. I didn't like this different person either but I couldn't help the way I was behaving. And it wasn't just the strange movements - I don't know why but I kept having to touch all the doors in the house exactly 100 times before I could leave a room. If I didn't, I thought something really bad would happen. Then, I'd have to wash my hands over and over again because of the germs on the handles. It would take me ages to leave a room. And I always wanted to be in the same room as mum or dad. If they tried to leave, I'd start panicking. One evening Sonny needed help with his homework, and I completely freaked out when mum left the room to help him. I started screaming and throwing things at both of them. I can't even remember how they reacted because I was in such a rage. On most days, I'd be in a rage for the whole afternoon and then I'd cry myself to sleep. It was exhausting. It didn't help that I wasn't sleeping properly. It took me hours to get to sleep and then I'd have night terrors - my brain felt like it was on fire and I'd sweat and scream for help. Even when I'd wake up, I'd still be trapped in the nightmare.

Mum kept taking me back to the doctor. I remember her telling him it was like living with a stranger. It made me really upset but for some reason I couldn't stop laughing - how I was reacting didn't match up. Mum told him all about my strange movements and how I kept checking things over and over again. She looked really worried when she told him how I'd stopped eating. I wanted to explain it was because food would make me sick but I just clung on to her and buried my face in her arms.

The doctor was nodding and writing notes. He said we should wait to see if things got better in the next few days then we could go to see a "mental health" doctor. I started panicking in case it meant I was crazy. He explained that they would try to find out if it was something called OCD - or Obsessive Compulsive Disorder - which meant having to do things in a certain way or a certain amount of times. It didn't explain lots of the other things but I could see mum was relieved that at least something was happening that might help.

Unfortunately, things got worse over the next few days. Different symptoms started appearing like wetting the bed, which I'd never done before, and massive mood swings - one minute I was running around laughing and then I was sobbing in the corner, unable to move. I'd always been really positive but now I didn't want to do anything. Even the things I loved doing like writing and playing football got difficult. I couldn't even make my hand move in the way I wanted it to. I could hardly pick up a pencil. I was getting more and more angry and upset that no one knew how to help me.

Over the next few weeks we saw so many different doctors. Eventually, one gave me medicine for OCD, but it didn't seem to make much difference. I had loads of blood tests and scans and we still didn't have an answer. And every time I got sick with a sore throat or cold, all my symptoms suddenly got worse. The trouble was I looked completely fine, so people found it hard to understand what was going on - even the doctors. It's hard to believe now, but this went on for months and months. Mum and dad searched the internet every night for clues. "We'll find out what it is," mum kept saying, "we won't stop until we do." I'm so glad they carried on searching, because eventually, when I thought I would be like this forever, mum found a doctor who could help. I was a like a big puzzle and only he managed to solve it.

He was a specialist in PANS and PANDAS and looked at my throat swabs and blood tests. He said all my weird symptoms were caused by something happening deep inside my brain. My brain was under attack! He explained that everyone has an "immune system" that fights bugs to make us well again. But my immune system wasn't acting in the right way. "Instead of fighting the bugs that made your throat sore," he said, "your immune system is fighting your brain, making it swollen and sore. Your brain controls everything, even your feelings - it's like a control centre for your whole body. But when it's swollen, it doesn't work very well - that's what is making you act in these strange ways."

Mum was crying when he was talking, but I knew they were happy tears. All our lives had been put on hold and at last, there was an answer. The doctor said I needed medicine to make my brain calm down. Once my brain was less swollen, the symptoms would hopefully get better. Mum was trembling as she said, "thank you for helping us."

Over the next few days, I started taking the medicine. The doctor said it might take some time to work because my brain had been swollen for quite a while. But at least we knew what was causing it. I had to be careful not to catch any other illnesses to give my brain a chance to calm down, but once it did, I should feel much calmer too. I could go back to living my life.

I am getting much better now. When I get sore throats, my symptoms do come back but it's easier than the first time, because we know why it's happening. Every time I get symptoms, it's like another puzzle trying to find the right medicine to get rid of whatever bug is making my brain sore again. But knowing what's happening makes everything a little less scary. So even though I'm still living with PANDAS, I'm almost back to being "Smiley Sam" again.

Questions and Answers with Dr Tim
What is PANS and PANDAS?
PANS and PANDAS are illnesses which appear suddenly and make you act in strange ways. They happen when your immune system attacks your brain, making it sore and swollen so it doesn't work properly. With PANS, we don't know what the trigger is. PANDAS is caused by a Strep infection.
What is your immune system?
Your immune system usually helps your body to fight bugs to make you well again. When you have PANS, your immune system gets confused and attacks your brain instead of the bugs.

What are some of the symptoms of PANS/ PANDAS?

PANS can affect everyone differently but some of the symptoms can include:

OCD (Obsessive Compulsive Disorder) - this is when your brain tells you to do things a certain way or a certain amount of times (like touching the door handles in Sam's case).

Problems with eating - only eating certain foods or, as in Sam's case, not eating at all. This may be because you are worried something bad will happen if you do eat.

Tics - moving in strange ways or making strange noises.

Mood Swings - being very happy one minute and then very angry or aggressive the next. This anger may last a long time. The brain controls your feelings but when it is swollen it does not control them properly.

Anxiety - being very worried about things that happen. If you have PANS, you can be worried about small things that would ordinarily not worry you like going to school or being apart from your parents.

Hallucinations - seeing or hearing things that are not really there.

Urinary issues - needing to go to the toilet a lot.
Will PANS go away?
Some children get better quickly once they start taking the right medicine, but sometimes it takes a longer time. The doctors will try to find out which medicine will help and then the symptoms should start to go away. It may take some time for the brain to calm down completely and if you get a new illness your symptoms might come back. But now the doctors know what is happening, they will try to find the right medicine quickly so you won't be as ill as the first time.
Can someone catch PANS from me?
PANS is not contagious so you cannot catch it or pass it on to someone else. It happens deep inside your brain, which is why it can sometimes take a long time to diagnose.

Author: Dr Ffion Jones

©️Invizo Ltd 2020

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Imagine what it is like to wake up one morning and you are completely lost. You're still in your room, and everything around you looks the same, but your whole world has changed. You're no longer you. And this new world, and the new you, is scary, confusing, and is trying to hurt you.

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Emotionally Based School Avoidance resource by Sarah Johnson that includes PANDAS

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Emotionally Based School Avoidance resource by Sarah Johnson that includes PANDAS

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Sensory processing in children with PANS and PANDAS

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Sensory processing in children with PANS and PANDAS

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https://onlinelibrary.wiley.com/doi/10.1111/1440-1630.12935?af=R

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Aus Occup Therapy J - 2024 - Newby - Occupational performance patterns in children with paediatric acute‐onset

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Many children with PANS or PANDAS may benefit from having an Individual Health Care Plan (IHCP)

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Many children with PANS or PANDAS may benefit from having an Individual Health Care Plan (IHCP)

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Welcome to PANS PANDAS UK. This is our Trauma Resources page.

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Aus Occup Therapy J - 2024 - Newby - Relationships between sensory reactivity and occupational performance in children with

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Supporting Your Child with PANS/PANDAS: An Occupational Therapy Perspective

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Supporting Your Child with PANS/PANDAS: An Occupational Therapy Perspective, a blog from Stepping Stones! Read more.

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In collaboration with Cathleen Long, PANS PANDAS UK have written a guide for social work, healthcare and education professionals.

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In collaboration with Cathleen Long, PANS PANDAS UK have written a guide for social work, healthcare and education professionals.

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PANS and PANDAS are complex. Straightforward recommendations for schools.

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PANS and PANDAS are complex. Straightforward recommendations for schools.

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PANS and PANDAS Awareness Poster for Schools

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PANS and PANDAS Awareness Poster for Schools

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https://panspandasuk.org/wp-content/uploads/2024/06/Schools-Poster-A4-FINAL-Digital.pdf

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* NEW * PANS and PANDAS Information and CPD Pack

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Where can I find out information about PANS and PANDAS?

This information and CPD pack is designed for adults working with children and young people in schools or other settings. In this FREE resource you can find:

- What are PANS and PANDAS information sheet

- Top Tips for supporting children with PANS and PANDAS

- Key facts about PANS and PANDAS

- CPD Training PowerPoint

You can find out more about PANS and PANDAS in this Twinkl Digest article.

What might PANS and PANDAS be diagnosed as?

PANS and PANDAS also share symptoms with lots of other conditions such as Tourette's Syndrome, ASC, Generalised anxiety disorder or OCD for example, and sometimes children are misdiagnosed and/or receive multiple diagnoses.

What are PANS and PANDAS?

PANS and PANDAS are a set of acute onset neuropsychiatric conditions that may include the development of OCD, tics or severe eating restrictions, alongside cognitive, behavioural and neurological symptoms.

They can cause severe difficulties with learning, attending school and being able to do age-appropriate activities. Some children with PANS and PANDAS go on to develop Special Educational Needs.

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PANS and PANDAS Information and CPD Pack

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This information and CPD pack is designed for adults working with children and young people in schools or other settings. In this FREE resource you can find:- What are PANS and PANDAS information sheet- Top Tips for supporting children with PANS and PANDAS- Key facts about PANS and PANDAS- CPD Training PowerPointYou can find out more about PANS and PANDAS in this Twinkl Digest article.

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Paediatric Autoimmune Neuropsychiatric Disorder associated with group A Streptococcus (PANDAS), is a condition seen in the paediatric population consisting of tics or obsessive compulsive disorder exacerbated or brought on by a common bacterial infection called Group A streptococcus (GAS). This infection may initially present with a sore throat or chest infection with the subsequent onset of neuropsychiatric symptoms (tics and obsessive compulsive behaviours). The disease sits under a bigger umbrella term "PANS" which stands for Paediatric Autoimmune Neuropsychiatric Syndrome. The term PANS/PANDAS and immune mediated behavioural change are often used interchangeably.

This group of disorders has been given ICD-11 code 8E4A.0 by the World Health Organisation but despite this an audit done in 2018 by The Children's e-Hospital showed that 90% of GP's were unfamiliar with this condition.

This group of disorders is thought to occur after the body produces an antibody to fight a common everyday infection. This antibody then goes on to stimulate a part of the brain called the basal ganglia which is involved with movement control (or regulation of obsessive compulsive behaviours) and this results in the abnormal movement, feeling or compulsion that the patient experiences.

PANS (Paediatric acute-onset neuropsychiatric syndrome) describes a clinical syndrome that may be caused by noninfectious or infectious triggers. Proposed diagnostic criteria for PANS include: the sudden onset of OCD or severely restricted food intake, severe neuropsychiatric symptoms (eg, anxiety, depression, emotional lability, etc) or symptoms not better explained by a known neurologic or medical disorder. The key words in this are "sudden onset". Symptoms appear dramatically and there is a rapid shift in the child's behaviour.

Background

Rheumatic fever has been a less commonly recognised condition over the past 30-40 years. Part of the diagnostic criteria for rheumatic fever included a condition called "Sydenham's chorea" or 'St. Vitus dance" . This was an abnormality of movement which was associated with streptococcal infection. Individuals diagnosed with rheumatic fever were given long term prophylactic penicillin to treat the condition and prevent disease relapse.

Dr Susan Swedo during her research into Sydenham's chorea realised that there were a sub-group of patients with tics & obsessive-compulsive behaviour that had a sudden onset of symptoms. This was very different to the movements seen with rheumatic fever. Crucially the symptoms had a very rapid pace of onset.

Signs & symptoms

PANDAS symptoms typically start abruptly, almost as if a switch has been thrown. Symptoms include tics, sleep disturbance, obsessive compulsive behaviour, deterioration in handwriting, eating disorders (including anorexia but the problems appear to be more centred on difficulty in coordinating swallowing), behavioural regression and urinary incontinence. By definition these occur following a streptococcal infection which then results in the stimulation of antibodies which stimulates the part of the brain involved in movement and behaviour regulation (the basal ganglia). Examination of the child reveals a child who is "trapped" or "psychologically burdened". They may have reduced muscle power and may show abnormal movements.

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is defined by the rapid onset of obsessive-compulsive disorder (OCD) or eating restrictions and comorbid symptoms from at least two of seven categories:

1. Anxiety (particularly separation anxiety)

2. Emotional lability or depression

3. Irritability

4. Aggression, and/or severely oppositional behaviors

5. Deterioration in school performance related to ADHD-like behaviors, memory deficits, and cognitive changes

6. Sensory or motor abnormalities

7. Somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency (Swedo et al. 2012; Chang et al. 2015). Acute onset cases that are triggered by Group A streptococcal infections may meet diagnostic criteria for both PANS and PANDAS.

The Children's e-Hospital PANDAS Clinical Model

The Children's e-Hospital PANDAS Model has been determined by analysis of over 200 patients with PANDAS who were treated by The Children's e-Hospital. This data and model were presented at the SANE PANS/PANDAS conference in Malmo, Sweden in October 2019.

Sub-groups

The analsis of the data by the Children's e-Hospital has revealed ten sub-groups each with their own features and/co-morbidities. These sub-groups are based on phenotypic (including laboratory data differences) between the different groups.

This sub-grouping will be used as a framework for further data gathering to enhance our undestanding of PANDAS.

Diagnosis

Criteria for diagnosis of PANDAS include:

1. Prescence of OCD and/or Tics

2. Pre-pubertal onset

3. Acute onset of symptoms with an episodic pattern

4. Association with a neurological abnormality

5. Temporal relationship with Group A strep infection (Determined by a raised ASO titre, Anti-DnaseB or isolation of group A streptococcus from a throat or skin swab).

Examination of the child should include looking at the throat, ears, skin (eg for impetigo or guttate psoriasis), examining the peri-anal area and genitals for infection, checking for a heart murmur and assessing weight and height.

Investigations

Having the right investigations to approach the management and treatment of a child with PANDAS is essential. Our experience has shown that there is variabilty between laboratories and that using the right laboratory is important. The investigations that we recommend are available to health care professionals through our Virtual Medical School (postgraduate section). It is important to look at the child as a whole and aim to optimise the health of the child. This will include looking at conditions such as allergy.

Disease monitoring

You can download the symptom diary by clicking on the following link; PANDAS symptom monitoring chart. This scoring sheet also allows parents to add detail such as whether or not a child is receiving antibiotics or anti-inflammatories. This information is invaluable in assessing the patients that we see using the Children's e-Hospital on-line service but can also be used to help parents with any health professionals they see.

Treatment of PANDAS

Treatment of a child with PANDAS must be evidence led. Treatment requires efficient interfacing between different health professionals which may include GP's, paediatricians, paediatric neurologists and psychiatrists. It is important that all aspects of a child's health are considered when a treatment plan is formulated. Treatment usually involves a combination of anti-inflammatory, anti-microbial, psychological and psychiatric therapies. The latter will also include behaviour modification therapies such as CBT and CbiT.

Cognitive behaviour therapy

The onset of PANDAS or PANS symptoms can be extremely distressing for the child and family members. It is therefore essential that psychological support with cognitive behaviour therapy (CBT) is initiated at an early stage. On-line CBT in children has been shown to be more effective than face to face therapy and also allows flexibility in seeking consultations. Using CBT gives parents the tools to manage their child during a crisis.

Comprehensive Behaviour Therapy for Tics (CBiT)

CBiT is a therapy that is used to teach people with Tic's ways to manage them. It is not a cure for tics, but it has been proven to help reduce the number, severity and impact of tics.

The success of CBIT comes from the comprehensive combination of therapies used within treatment, these consist of Psychoeducation, Self-awareness training, Relaxation training, Establishing a tic hierarchy, selecting a target tic and reverse engineering it, Formulating a competing response to the target tic using habit reversal techniques, and Social support. CBIT is recommended as a first line intervention for tics by the American Association of Neurology.

The main component of CBiT is Habit Reversal Therapy (HRT). A second method is called Exposure Response Prevention (ERP). The main aim of ERP is for you to learn to tolerate the urge that comes before a tic, by learning to tolerate the urge you are learning to suppress the tic.​ This can also be hard work, and an uncomfortable sensation to begin with but with lots of practice it gets easier. By exposing your tics, you practice resisting the urge for longer and longer periods of time, until you can stop it in most situations for a period of time. Evidence suggests that ERP is as effective as Habit Reversal Therapy. ERP is best suited to individuals who have a range of troublesome tics or are young. Tic reduction is the result.
You can book either a single CBiT session or a package of 10 sessions with our CBiT therapist Sarah Sharp by using our online booking site.

Maintainance therapy

Once disease remission has been achieved the antibody level will gradually fall and symptoms will slowly improve unless the immune system is restimulated eg with another infection.

Long term antibiotic use is not without consequence. It is important to limit the amount of antibiotic that your child receives to a minimum, thus avoiding problems such as clostridium difficile infection.This must be coordinated with the help of your GP, neurologist or paediatrician. The practice in the United Kingdom is much more conservative compared with the US and there is much more emphasis on antibiotic stewardship. Despite this conservative approach our results from the Children's e-Hospital most recent audit show that nearly three quarters of our patients show a good response to treatment.

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Paediatric Autoimmune Neuropsychiatric Disorder associated with group A Streptococcus (PANDAS), is a condition seen in the paediatric population consisting of tics or obsessive compulsive disorder exacerbated or brought on by a common bacterial infection called Group A streptococcus (GAS).

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Twinkl : A Guide for Parents/Caregivers about PANS PANDAS

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Twinkl : A Guide for Parents/Caregivers about PANS PANDAS

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In this article, the first of our hidden disabilities series for parents, we look at Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). We share advice and resources from The PANS PANDAS UK Charity for families who find themselves faced with the conditions.

This article will cover:

What are Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)?

What are the symptoms of PANS and PANDAS?

What should parents and carers be aware of?

How can family and friends help parents of children with PANS/PANDAS?

What should parents and carers tell their child's school?

Where can you find further information and support?

What are Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)?

Information in this article is shared with consent from The PANS PANDAS UK Charity.

Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a neuropsychiatric condition, which is triggered by a misdirected immune response.

Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) is a subset of PANS. Similarly, it is a neuropsychiatric condition, which is triggered by a misdirected immune response to a streptococcal infection.

While there are no official statistics for the prevalence of these conditions in the UK, however US researchers estimate that 1 in 200* children may be affected to some degree. * http://www.pandasnetwork.org/statistics/

What are the symptoms of PANS and PANDAS?

PANS and PANDAS are usually characterised by a sudden onset of multiple unexplained changes.

Children with PANS PANDAS often experience the sudden onset of unexplained changes in lots of different areas. These can include:

New issues with learning

Physical problems

Social skills, behaviour, and emotional difficulties

These changes follow a streptococcal infection in PANDAS, and in PANS can be triggered by a wide range of infections including strep, chickenpox, COVID-19, pneumonia, hand foot and mouth disease, or environmental triggers such as allergies. The symptoms are often very distressing for the children and their families.

They can cause severe difficulties with learning, attending school and being able to access age-appropriate activities. Some children with PANS PANDAS go on to develop Special Educational Needs.
Diagnostic Criteria
What should parents and carers be aware of?
PANS/PANDAS can be present alongside other conditions such as ASD and ADHD, or they can present as ADHD and ASC.
Parents/Carers should be aware of the possibility of PANS PANDAS if their child develops lots of unexplained changes in their functioning following an infection. Symptoms are wide-ranging and can include the development of tics, the onset of obsessive-compulsive disorder or eating restrictions alongside writing changes and regression in maths skills.

Some children also develop:

New concentration and attention difficulties

Sensory needs

Behavioural regression

Aggressive behaviours

Severe anxiety including separation anxiety

A minority of children at the severe end of the spectrum can even develop hallucinations* or symptoms of psychosis. Children do not need to have all the symptoms.

*hallucinations must be investigated by a medical professional

Children with PANS PANDAS can all present very differently, and it can be challenging to recognise the condition. It is important to recognise that parents and caregivers will have the most insight into their own children and the severity of the change in presentation. Each child will have a unique profile of symptoms. These often follow a remitting and relapsing course and can be very confusing for parents/carers and educators alike to understand. Some children also have a mixed pattern of chronic and episodic symptoms.

Often in PANS PANDAS, the term 'flare' is used, and this refers to a period when multiple symptoms are heightened and sometimes severely. Some children, unfortunately, do not return to their baseline following a 'flare.' Evidence suggests that children who are treated quickly have much better outcomes. Schools, Social Care Professionals, GPs, and Parents/Caregivers all have a crucial role in this.

The symptoms in PANS PANDAS are similar to those in many other conditions.

Among other conditons, children with PANS PANDAS are also sometimes misdiagnosed as having:

It is important to be aware that PANS PANDAS can also be present alongside other conditions or they can present in very similar ways. The key is the timing of onset, gathering a comprehensive history alongside recognising the constellation of symptoms as linked. Any professionals who are supporting children with PANS PANDAS should have a working knowledge of the conditions.
PANS PANDAS often impact on multiple functional domains including cognitive, social, physical, emotional and behavioural.
For some children, symptoms may appear to come and go, reappearing only after a 'flare'.

For others, it may be a mixture of chronic and flare symptoms. Chronic symptoms may be present most of the time, with flare symptoms reappearing when 'triggered'. Each child will have their own set of triggers, these could be infection based and/or psychological. Stress and lack of sleep are likely to exacerbate the symptoms.

The PANS PANDAS UK Charity recognise that dealing with PANS PANDAS can be difficult for families. They have created this leaflet that is full of helpful information specifically for parents who suspect their child has PANS or PANDAS or who want to learn more about the conditions.

How can family and friends help parents of children with PANS/PANDAS?

This section contains information and advice to share with family and friends so they know how best to support parents who have a child with PANS/PANDAS

Supporting the child

Please remember that it can be difficult to understand the extent of the distress in PANS PANDAS as many symptoms are not easily observable

The child's actions are not behavioural - they are due to an autoimmune and inflammatory response in the brain

Every child is different - speak to the child's parents to see how the illness is affecting their child

Don't judge - Common parenting techniques and discipline are often not effective in managing the symptoms of PANS PANDAS

It is important to remember that these children are ill, not naughty Supporting the parents
Caring for a child with PANS PANDAS can be a huge struggle emotionally, physically and economically. Families are often abruptly thrown into the intensely difficult situation of a very poorly child, alongside the currently challenging landscape to access health and educational support.

Sleep is often difficult and therefore offering help with daily tasks can be greatly appreciated

Offer to cook some healthy meals

Offer a safe place for the parent to talk and cry

Offer to babysit so parents can have some much needed time out. Either during the day or evening

Be understanding if the family repeatedly cancels plans last minute

Supporting the siblings
It can be difficult for siblings to understand the impact of PANS PANDAS. They can often be on the receiving end of physical behaviours and their parents may have little time or energy to give them the attention they deserve. Here are some things that friends and family could do to help:

Looking after the child with PANS PANDAS (if they are well enough) so that the parent can spend some 1-2-1 time with the siblings

Take the sibling out for special treats

Offer a safe space for the sibling to talk

Help out with taking the sibling to after school clubs

For more information to share with friends and family follow this link to a leaflet from The PANS PANDAS UK Charity.

What should parents and carers tell their child's school?
Once PANS or PANDAS is suspected, detailed assessments should be undertaken as soon as possible to establish a comprehensive and holistic baseline.
Parents/caregivers should speak to their child's school to make them aware of the current medical issues around diagnosis and treatment. It may be helpful to remind the school that, as with all conditions, children should be appropriately supported based on their presentation. Children and young people do not require a medical diagnosis in order to receive support.

It is also important to understand that some children with PANS PANDAS also mask or partially mask in school and it may well be that the child is presenting differently in different environments. Schools should also consult with the child's previous setting if they did not know the child prior to onset. Any assessments or observations should also be understood as only a 'snapshot' as the symptoms in PANS PANDAS can dramatically wax and wane. Outcomes will therefore differ depending on the health status of the child at the time.
PANS/PANDAS often impacts substantially on attendance.
As mentioned earlier in the article, at the severe end of the spectrum, children can suffer from severe anxiety including separation anxiety, violent and aggressive outbursts, severe sleep difficulties, intrusive thoughts, suicidal ideation, compulsions, tics, and in some cases even auditory, visual, and tactile hallucinations*. These all need to be understood as a physiological response due to an inflammatory/autoimmune response. The primary medical aim is to reduce the immune mediated response. Schools should provide compassion alongside supportive modifications. Health needs should be prioritised. All pupils should have a plan in place for acute symptom exacerbations including early warning signs, and how these will be communicated.

*hallucinations must be investigated by a medical professional
PANS/PANDAS are complex brain conditions and require a collaborative approach from parents, educators, and medical professionals.
The child or young person is likely to require different approaches and supports depending on their health status and the trajectory of the condition. The efficacy of traditional accommodations need to be considered within the context of the condition, i.e., the primary cause, trajectory, and patterns of waxing and waning symptoms. This includes managing the significant pastoral needs both during and following a 'flare.' Many children suffer with secondary impacts including fear of failure, low self-esteem and the impacts of trauma. Settings should also be aware of the significant impact on siblings alongside the caregiver burden for families.
Families should make teachers aware that a child's ability to function may well be variable from day to day, and certainly within periods of remission and a flare.
This variability relates to highly specific skills such as writing, working memory and executive functioning in addition to other neuroimmune impacts that may include 'brain fog,' alongside concentration and attention difficulties.

This Twinkl Digest article for educators has information to share with your child's school to help raise awareness of the conditions PANS and PANDAS.

In Summary

PANS PANDAS are neuropsychiatric conditions whereby the symptoms occur as a direct result of an immune mediated/inflammatory process affecting the brain

CHILDREN with PANS PANDAS usually present with lots of sudden unexplained changes. These can be physical, emotional, behavioural and cognitive

PANS PANDAS share many symptoms with other conditions. It is important to consider the timing of onset and to document all of the changes in the different areas. It can only be diagnosed by a medical professional following careful evaluation

CHILDREN with PANS PANDAS often struggle to attend school and can develop Special Educational Needs. Many children require additional support in school

Current levels of awareness of the conditions in the UK is low amongst medical practitioners, social care professionals and educators

Early identification and treatment lead to better outcomes

CHILDREN and their families with PANS PANDAS require a compassionate and informed multi-agency approach

Where can you find further information and support?

Visit The PANS PANDAS UK Charity website where you can sign up to their newsletter and find links to books and further information

You could use this poster to raise awareness of PANS and PANDAS

Watch this video, 'Living with PANS/PANDAS' : A candid and moving 10-minute documentary featuring the voices of parents with children affected by PANS/PANDAS

The above video may be from a third-party source. We accept no responsibility for any videos from third-party sources. Please let us know if the video is no longer working.

Speak to the wonderful PANS/PANDAS community of Facebook and Twitter
This article was written with huge thanks to The PANS PANDAS UK Charity for allowing Twinkl Digest to use their information and resources.
Our resources, articles, and other content may contain information and quotations from external educators, information sources, and other third parties. Views expressed by external parties do not necessarily reflect the views of Twinkl. Information provided in this resource, article, or content is intended for general informational purposes only and should not be relied upon. The inclusion of any link should not be taken as an endorsement of any kind by Twinkl of the linked website or any association with its operators. You should also be aware that we have no control over the availability of the linked content.

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In this article, the first of our hidden disabilities series for parents, we look at Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). We share advice and resources from The PANS PANDAS UK Charity for families who find themselves faced with the conditions.

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In this article, we look at Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). We share advice and resources for educators from The PANS PANDAS UK Charity and ask, what do teachers need to be aware of?

This article will cover:

What are Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)?

What are the symptoms of PANS and PANDAS?

What should teachers be aware of?

Where can you find further information and support?

What are Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)?

Information is this article is shared with consent from The PANS PANDAS UK Charity.

Image shared with consent from PANS PANDAS UK

Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a neuropsychiatric condition which is triggered by a misdirected immune response.

Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a streptococcal infection.

While there are no official statistics for the prevalence of these conditions in the UK, US researchers estimate that 1 in 200* children may be affected to some degree. * http://www.pandasnetwork.org/statistics/

What are the symptoms of PANS and PANDAS?

PANS and PANDAS are often characterised by a sudden onset of multiple unexplained changes.

Picture shared with consent from PANS PANDAS UK

What should teachers be aware of?
PANS/PANDAS can be present alongside other conditions such as ASD and ADHD, or they can present as ADHD and ASC.
The key is the timing of onset and recognising the constellation of symptoms. Children with PANS/PANDAS are also sometimes misdiagnosed as having Tourette's Syndrome, ADHD, Anorexia Nervosa, ARFID, Generalised Anxiety Disorder, OCD and Autism amongst other conditions.
PANS/PANDAS often impact on multiple functional domains including cognitive, social, physical, emotional and behavioural.
For some, the condition may be episodic with the pupil returning to baseline following a flare.

For others, it may be a mixture of chronic and flare symptoms, or it may be chronic static or chronic progressive. Progress and attainment may well follow an atypical pattern of regression and recovery. Disorders such as dysgraphia or handwriting regression that 'appeared' with onset will also reflect these patterns. Each child will additionally have their own set of triggers, these could be infection based and/ or psychological. Stress and lack of sleep are likely to exacerbate symptoms.
School accommodations should be aware that a child's ability to function may well be variable from day to day, and certainly within periods of remission and a flare.
This variability relates to highly specific skills such as writing, working memory and executive functioning in addition to other neuroimmune impacts that may include 'brain fog,' alongside concentration and attention difficulties.
Once PANS or PANDAS is suspected, detailed assessments should be undertaken as soon as possible to establish a comprehensive and holistic baseline.
Schools should listen to the parents/caregivers and be aware of the current medical issues around diagnosis and treatment. As with all conditions, children should be appropriately supported based on their presentation, and do not require a medical diagnosis.
PANS/PANDAS often impacts substantially on attendance.
Children can suffer from severe anxiety including separation anxiety, violent and aggressive outbursts, severe sleep difficulties, intrusive thoughts, compulsions, tics, and in some cases even auditory, visual, and tactile hallucinations*. These all need to be understood as immune mediated. The primary medical aim is to reduce the immune mediated response. Schools should provide compassion alongside supportive modifications. Health needs should be prioritised. All pupils should have a plan in place for acute symptom exacerbations including early warning signs, and how these will be communicated.

*hallucinations must be investigated by a medical professional.
PANS/PANDAS are complex brain conditions and require a collaborative approach from parents, educators, and medical professionals.
The pupil is likely to require different approaches and supports depending on their health status and the trajectory of the condition. The efficacy of traditional accommodations need to be considered within the context of the condition, i.e., the primary cause, trajectory, and atypical patterns of regression/improvement. This includes managing the significant pastoral needs following a 'flare.' Settings should also be aware of the significant impact on siblings alongside the caregiver burden for families.

Where can you find further information and support?

The PANS PANDAS UK Charity have created a very helpful Padlet with information for educators

You could use this poster to raise awareness of PANS and PANDAS

Take a look at this video for education professionals : ' Supporting children with PANS and PANDAS in Educational settings.'

Watch this video, a candid and moving 10-minute documentary featuring the voices of parents with children affected by PANS/PANDAS

The above video may be from a third-party source. We accept no responsibility for any videos from third-party sources. Please let us know if the video is no longer working.

Educators can contact The PANS PANDAS UK Charity directly on schools@panspandasuk.org
This article was written with huge thanks to The PANS PANDAS UK Charity for allowing Twinkl Digest to use their information and resources.
Our resources, articles, and other content may contain information and quotations from external educators, information sources, and other third parties. Views expressed by external parties do not necessarily reflect the views of Twinkl. Information provided in this resource, article, or content is intended for general informational purposes only and should not be relied upon. The inclusion of any link should not be taken as an endorsement of any kind by Twinkl of the linked website or any association with its operators. You should also be aware that we have no control over the availability of the linked content.

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Hidden disabilities: What do educators need to know about Paediatric

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In this article, we look at Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). We share advice and resources for educators from The PANS PANDAS UK Charity and ask, what do teachers need to be aware of?

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Neuroimmune Foundation : School Resources for PANS/PANDAS

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Neuroimmune Foundation : School Resources for PANS/PANDAS

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Back to School: Supporting Children With Neuroimmune Disorders in The Classroom With Therapist Eileen Devine

​Steeped in neuroscience, yet easy to understand through a neurobehavioral lens, this one hour webinar will clearly articulate why traditional classroom behavior management systems don't work for children with neuroimmune disorders and what children can do instead.

This webinar is for parents as well as teachers.

Eileen Devine, LCSW is a therapist who works with parents of children with special healthcare needs through her private clinical practice. She has over a dozen years of clinical experience, with a special emphasis on working with families impacted by Fetal Alcohol Spectrum Disorder (FASD) and other brain-based (neurobehavioral) conditions that have challenging and confusing behavioral symptoms. She is an instructor for the Post-Master's Certificate in Adoption and Foster Family Therapy through Portland State University's Child Welfare Partnership where she teaches other providers how to use the neurobehavioral model in their work with families. She also has the great fortune of facilitating dozens of other trainings and workshops for parents and providers each year on a variety of topics that are relevant to the experience of being a parent of a child with a neurobehavioral condition. In addition to this professional experience, Eileen has the lived experience of parenting a child with significant neurobehavioral challenges. Her goal is to support parents and caregivers of children with these frequently understood brain-based conditions on their unique parenting journey so that they, their children, and their family can thrive.

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PANS & PANDAS Resources for Schools & Teachers | Neuroimmune

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​Steeped in neuroscience, yet easy to understand through a neurobehavioral lens, this one hour webinar will clearly articulate why traditional classroom behavior management systems don't work for children with neuroimmune disorders and what children can do instead. This webinar is for parents as well as teachers.

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0:00 / 7:12•Watch full video

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How Immune Response to Strep Infection Triggers BGE Breakdown of Blood Brain Barrier PANDAS/PANS

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There are several areas to consider evaluating students with PANS PANDAS in order to determine areas for support and accommodations. It is important to note that due to the relapsing-remitting course of PANS PANDAS, some students return to baseline in between flares while some skills stay below their baseline. So the timing of assessments in relation to disease course and presence of symptoms is critical.

Areas of Evaluation to Consider

Physical Therapy
Assess need for Adaped PE & other modifications

Occupational Therapy

Assess handwriting - dysgraphia skills

Assess fine motor skills

Assess daily living skills

Visual-Motor Processing

Speech & Auditory Processing
Including Assisted Technology needs

Academics & Socio-Emotional Learning

Assess gaps and losses in skills

Assess memory skills

Assess executive functioning

Functional Behavioral Assessment (FBA)
Assess for Behavioral Intervention Plan (BIP)

Ecological Assessment

can help to manage antecedents throughout the school day

Can help determine areas most/least conducive to learning

School Nurse Assessment

Assess medical needs at school

Establish communication between school, providers, & parents

Psychiatric Referrals
To help monitor OCD, anxiety, social-emotional learning, and other symptoms

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School Evaluations for PANS PANDAS - Aspire

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There are several areas to consider evaluating students with PANS PANDAS in order to determine areas for support and accommodations. It is important to note that due to the relapsing-remitting course of PANS PANDAS, some students return to baseline in between flares while some skills stay below their baseline.

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PANS & Eating Restrictions at School - Aspire

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PANS & Eating Restrictions This section on Restrictive Eatings at School is part of a larger section on Restrictive Eating seen in PANS PANDAS. Make sure to read the entire section too. PANS & Eating Restrictions Strategies for School You one include accommodations and goals for restrictive eating in an IEP.

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PANS/PANDAS is not the same as traditional OCD or a tic disorder; the onset and concurrent symptoms and, in some cases, the severity of the OCD set these disorders apart. It is critical to get the diagnosis correct because the treatment plans for PANS/PANDAS and Tourette Syndrome are quite different. Unfortunately, there is a lack of universal knowledge about the differences, similarities, and treatment of these disorders. We must continue to advocate and educate to narrow the knowledge gap to ensure proper diagnosis and treatment.

Thank you to Romy Worthington for all her work spreading awareness about PANS PANDAS and tics. If you are not familiar with her story, please read our interview with this incredible young lady. Please read her article on the overlap between PANS/PANDAS and Tourette Syndrome.

PANS PANDAS and Tourette Syndrome - The Overlap
Written by Romy Worthington. Edited by Gabriella True.
It can be challenging to distinguish PANS/PANDAS from Tourette Syndrome or other tic disorders, leading to misdiagnosis or underdiagnosis of PANS/PANDAS. The lack of understanding about these disorders can cause skepticism towards PANS/PANDAS, as people believe the symptoms are only a result of Tourette's. It is important to note that patients may appropriately be given both diagnoses.

Often in the PANS/PANDAS community, we see two different scenarios involving Tourette Syndrome. First, commonly someone who meets the diagnostic criteria of PANS/PANDAS is misdiagnosed as only having Tourette Syndrome, which blocks them from appropriate treatment. The other scenario is when someone has been diagnosed with PANS/PANDAS, but a new doctor comes in and says, no, you don't have that; it doesn't exist, leaving the patient and family confused, frustrated, and the patient undertreated. Ultimately, receiving the incorrect diagnosis can prevent access to proper care.

Tourette Syndrome and PANS/PANDAS do have similarities and can sometimes be easily confused, but the numerous differences distinguish these conditions. Please note that each point below will not apply to everyone, as PANS/PANDAS and Tourette Syndrome are diverse conditions that can affect everyone uniquely.

Similarities:

Motor and vocal tics can occur in both Tourette Syndrome and PANS/PANDAS. To receive a Tourette Syndrome diagnosis, one must have both motor and vocal tics for at least one year, along with a few other criteria. Around 70% of people with PANS/PANDAS have tics. In PANDAS, tics and OCD are the major symptoms, but symptoms described in the PANS diagnostic criteria can and usually co-occur. Technically, a PANDAS diagnosis only needs to have either tics or OCD; one doesn't have to have both. For a PANS diagnosis, one has to have OCD or Restricted Food Intake along with comorbid symptoms from two out of seven categories, including movement disorders and tics, but again, tics are not required.

All tics are sudden onset whether one has a diagnosis of a tic disorder, Tourette Syndrome, or PANS/PANDAS. However, if tics and comorbid symptoms reach full severity within a day or two, a complete evaluation for PANS PANDAS should be considered.

OCD is a major symptom of PANS/PANDAS, and OCD also commonly co-occurs with Tourette Syndrome.

ADHD frequently co-occurs with Tourette Syndrome; people with Tourette Syndrome and co-occurring ADHD often have ADHD symptoms from a young age. While people with PANS/PANDAS can experience ADHD-like symptoms too, symptoms can vary from flare to flare, so they may not always have ADHD-like symptoms, or they might not start during the same exacerbation as the tics do. For example, in PANS, one can have OCD, tics, and urinary frequency as their main symptoms in one flare but have OCD, tics, and ADHD-like symptoms in a secondary flare.

Rage can occur in Tourette Syndrome and PANS/PANDAS.

All three disorders often start in childhood. However, the onset of PANS can occur in adulthood. Despite the Tourette Syndrome diagnostic criteria stating symptoms must begin before the age of 18, there have been cases of adult-onset, but typically there were soft signs throughout childhood that went unrecognized.

Complex tics such as echophenomena, coprophenomena, paliphenomena, mental tics, sensory tics, and phantom tics can occur in Tourette Syndrome and PANS/PANDAS

Both Tourette Syndrome, PANS/PANDAS, and OCD affect the Basal Ganglia functioning in the brain, explaining why some symptoms can be similar.

Differences:

The cause of Tourette Syndrome is not known. Strep infections trigger PANDAS, and it is a form of basal ganglia encephalitis. PANS has multiple etiologies and disease mechanisms.

People with PANS/PANDAS can experience symptoms that do not typically occur in people with Tourette Syndrome. These symptoms may include enuresis and increased urinary frequency, psychosis, difficulty swallowing, low muscle tone, coordination changes, a deterioration in handwriting and maths ability, developmental regression, intense brain fog, restricted food intake, personality changes, dilated pupils, and memory decline. Please note that not everyone with PANS/PANDAS will have all these symptoms.

No matter the diagnosis, the onset of motor or vocal tics can be stressful and disruptive, especially when severe. However, PANS/PANDAS symptoms can cause a change in someone's personality, adding to the patient's distress; they can alter how one acts and perceives the world. Some people with PANS experience brain fog, regression, irritability, personality changes, memory problems, oppositional defiance, personality change; some describe it as losing themselves. Saying this, however, some people's PANS/PANDAS may present predominantly with tics, OCD, and ADHD, so their symptomatic profile will be similar to Tourette Syndrome. Thus, examining the timing of the onset of symptoms and possible triggers such as strep or other infections is critical.

Tourette Syndrome symptoms can wax and wane, meaning that the severity of the condition can fluctuate on a daily, weekly, or monthly basis. Typically the PANS/PANDAS disease course is one in which symptoms relapse and remit depending on exposure to a new trigger or implementation of treatment; recovery from a flare/exacerbation can often be sawtooth with good/bad days or weeks. PANS/PANDAS patients may have some residual symptoms between flares/exacerbations, but the neuropsychiatric symptoms abruptly return when exposed to a trigger.

The onset of PANS/PANDAS is usually triggered by an infection, though PANS can also have non-infectious triggers. An infection does not trigger the onset of Tourette Syndrome. Still, people with Tourette syndrome can see a slight worsening in symptoms when ill.

Antibiotics often reduced or resolve PANS symptoms, whereas they do not have the same effect on Tourette Syndrome symptoms. Note, a bacterial infection does not trigger all PANS symptoms, so antibiotics do not work always work. Also, some patients may not respond well to a specific antibiotic, requiring a different kind. Additionally, PANS PANDAS patients need to treat their dysregulated immune system; treatment for this depends on symptom severity. Treatment for immune issues and inflammation ranges from NSAIDs to IV steroids to IVIG or other immune modifying medications.

In Tourette Syndrome, comorbid conditions may develop independently of the onset of tics. For example, in early childhood, someone with Tourette Syndrome may have had ADHD traits but then later develop OCD, then in adulthood, develop depression. Whereas, in PANS/PANDAS, tics have a concurrent onset as the other symptoms. Because someone with PANS/PANDAS can develop new comorbid symptoms with each flare, the difference can seem confusing at first. But, again, the new symptoms in PANS/PANDAS are co-occurring with the onset tics and other symptoms. For example, as a young child, someone with PANS/PANDAS may abruptly have tics, ocd, separation anxiety, sensory processing issues, and depression but then in another flare, abruptly have tics, ocd, and this time ADHD-like symptoms. It is the fact that the various symptoms have co-occurring abrupt onset that distinguishes the gradual onset of the multiple symptoms someone with Tourette disorder may get over years.

Why is a Misdiagnosis Harmful?

A misdiagnosis can be harmful for many reasons; the first reason is that it prevents people from accessing the correct treatment. The interventions required to alleviate symptoms in PANS/PANDAS are different from the strategies used to manage Tourette Syndrome. While the typical psychotherapeutic methods to manage tics are sometimes utilized in PANS/PANDAS, they may not target all the symptoms or the medical complexity. PANS/PANDAS treatment requires a three-pronged approach. 1) Remove the source of inflammation, 2) treat the dysregulated immune system, and 3) treat symptoms psychotherapeutically as needed. For example, suppose someone with tics also has PANS/PANDAS but has not been diagnosed. In that case, they may experience a modicum of improvement in their tics from psychotherapeutic intervention typically used to manage tics. However, this singular approach is insufficient to treat the tics or the other symptoms resulting from neuroinflammation and a dysregulated immune system with lasting remission.

The second reason why misdiagnosis is harmful is they may not be prepared for what could happen to them when they experience another flare. So when they get an infection that triggers new PANS/PANDAS symptoms, they do not know why or how to treat them. As a result, they may end up receiving a long list of diagnoses that keep adding on top of each other. Having new symptoms out of the blue can be terrifying and incredibly stressful. Then when treatment is not working, the stress is amplified. But, if they had initially received a PANS/PANDAS diagnosis, they would know these symptoms have the same root cause, and the three-pronged approach can potentially lead to lasting remission or at least a lessening of the severity of symptoms.

Tourette Syndrome and PANS PANDAS can be serious conditions that have a considerable impact on a person's life and can affect a person's ability to perform daily tasks. So getting the correct diagnosis or diagnoses can have a lasting effect. Therefore, it is crucial to find a doctor who can do a thorough investigation and medical examination to see whether a patient's tics are due to Tourette Syndrome, another tic disorder, PANS/PANDAS, or another condition.

Disclaimer: I am not a medical professional; this is not a substitute for diagnosis or treatment from a qualified physician; this is for educational purposes only. For medical advice, please see a medical practitioner. I do NOT claim to treat, cure or mitigate any condition.
Sensory Motor Issues
For more information on Sensory and Motor Abnormalities, including Tics in PANS PANDAS, see
Dr. Swedo on Tourette Syndrome
Article: Dr. Susan Swedo on Relationship between PANS & PANDAS and Tourette's syndrome

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PANS PANDAS and Tourette Syndrome - The Overlap - Aspire

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PANS/PANDAS is not the same as traditional OCD or a tic disorder; the onset and concurrent symptoms and, in some cases, the severity of the OCD set these disorders apart. It is critical to get the diagnosis correct because the treatment plans for PANS/PANDAS and Tourette Syndrome are quite different.

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ASPIRE'S Professional Advisory Board publishes PANS/PANDAS Guidelines for Children with Autism

Download and Share Today!

No one should be denied a proper evaluation of PANS PANDAS. Members of the ASPIRE Professional Advisory Board have written PANS/PANDAS Guidelines for Children with Autism because too often, the medical conditions of children with autism are overlooked and dismissed as "just the autism," but children with autism are at risk for the same medical conditions as children without autism, including PANS PANDAS. This informational packet discusses the unique challenges of diagnosing PANS PANDAS in kids with autism, what it can look like in the school setting, the PANS diagnostic criteria, and treatment guidelines. Please share this information; let's work on having children properly diagnosed and treated, so we do not consign them to a lifetime of mental health issues.

To Download: Click the button below to download the eight-page information packet - ASPIRE PAB PANS/PANDAS Guidelines for Children with Autism. Register with ASPIRE to download this information packet.
Autism PANS Guidelines
To Email or Share this Page Via Social Media: Copy and paste the link or use one of the buttons on the side (desktop) or bottom (mobile) of each page of the website.

PANS PANDAS & Autism

Children who have autism spectrum disorder (ASD or autism) are at risk for the same medical conditions as children without autism. Therefore, they are susceptible to developing Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections (PANDAS). However, diagnosing PANS and PANDAS can be more challenging in children who have autism because of the overlapping clinical presentations. For example, ritualized, repetitive behaviors are common to both disorders, so to make a diagnosis of PANS or PANDAS in a child with ASD, there must be an abrupt and discernable change in behavior such as new rituals, restricted food or fluid intake, excessive irritability or a worried/anxious appearance.

If a child has sudden regressive autism, they should be evaluated for PANS/PANDAS.

If a child has sudden worsening of symptoms associated with autism, they should be evaluated for PANS/PANDAS.

If a child with autism has new behaviors or symptoms that correspond to the PANS/PANDAS diagnostic criteria, they should be evaluated for PANS/PANDAS.

Important to note: Because of the sudden change in behavior, children with and without autism are often referred for psychiatric care without consideration of PANS/PANDAS. As a result, these children may be misdiagnosed and/or receive the wrong treatment.

ASPIRE Professional Advisory Board Contributing Authors:

Susan Swedo, MD - Scientist Emerita National Institute of Mental Health

Nancy H. O'Hara, MD, MPH, FAAP- Integrative Pediatrics, New England Center of Health

Sydney Rice, MD, Msc - Developmental Pediatrics, Co-Director Childhood Autoimmune Encephalopathy Clinic, University of Arizona

Anu French, MD, FAAP, ABoIM - Integrative Pediatrician SSM Health Cardinal Glennon Pediatrics

Fern Aaron Zagor, LCSW, ACSW - Principal Consultant, Fern Zagor, LLC

Click for more information about the ASPIRE Professional Advisory Board.

Also, see:
PANS PANDAS & Autism Flyer
Return to Section:
Handouts & Brochures

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PANS/PANDAS Guidelines for Children with Autism - Aspire

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ASPIRE'S Professional Advisory Board publishes PANS/PANDAS Guidelines for Children with Autism Download and Share Today! No one should be denied a proper evaluation of PANS PANDAS. Members of the ASPIRE Professional Advisory Board have written PANS/PANDAS Guidelines for Children with Autism because too often, the medical conditions of children with autism are overlooked and [...]

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Some children and young people develop PANS following Covid. The Charity Long Covid Kids have a fantastic set of education resources. 

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Some children and young people develop PANS following Covid. The Charity Long Covid Kids have a fantastic set of education resources. 

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The Long Covid Kids Educational Toolkit consists of four videos that aim to increase awareness and understanding of Long Covid and related illnesses among educators. As well as providing educators with supportive strategies to help learners living with Long Covid.

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Aspire School Nurse Role and Toolkit : PANS/PANDAS

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Aspire School Nurse Role and Toolkit : PANS/PANDAS

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PANS/PANDAS School Nurse Information

Register with ASPIRE to download the twelve-page PANS PANDAS School Nurse Overview information toolkit and share this page.
ASPIRE School Nurse Information Toolkit
School Nurses play an integral role in the health of students. They support students and student health every day of the year. Children with PANS/PANDAS have complex physical and mental health conditions that benefit from the support of a School Nurse. They connect providers, parents, & school, staff working to bolster student attendance and wellness. A School Nurse can coordinate care between the child's health care providers, other staff, and parents, so their health needs are met at school and are ready to learn. Taking the time to communicate and collaborate as a team is a key part of ensuring a PANS/PANDAS student's success.

"The school nurse, as a member of a multidisciplinary team, benefits from an awareness of these disorders, the resulting impact on school performance, and the recommended treatment." - Kathy Bagian, MSN, RN, CSN, Sheila Q. Hartung, Ph.D., RN, Is It PANS, CANS, or PANDAS? Neuropsychiatric Pediatric Disorders That Are Not Black and White-Implications for the School Nurse
ASPIRE School Nurse Information Packet
Unique Position of the School Nurse

The school nurse, equipped with medical information, is in a valuable position to assist in the identification of possible PANDAS cases. She may be the significant professional in a school setting who is first able to link a recent or recurring strep infection with sudden atypical behavior. The perceptive school nurse will also be able to identify and consider any variety of confounding medical symptoms. - Kathy O'Rourke, MA, PANDAS in the School Setting

May be the first person to establish a link between a recent or recurring strep infection with a sudden onset of atypical behavior

Can help report any abrupt changes in behavior, eating habits, or school performance to the family

Can inform parents of any communicable illness in the classroom

Can help develop and monitor attendance places and IHP/IHC

May be the person who knows the student better over time

School Nurse Role

Bridge communication between staff, parents and outside providers

Develop and monitor Individual Healthcare Plans (IHP/IHCP)

Provide guidance to the team developing 504 and IEP plans

Infection Control - Communicate with family and school community about strep and other infectious illness (strep, mycoplasma pneumonia, Coxsackie, impetigo, etc.)

Provide ideas for reducing infection spread in the classroom

Send Notification of Strep or Other Infection letters to the school community

Inform parents of PANS/PANDAS students if strep or a particular illness is going around the school

Request that the school community to inform the School Nurse office of strep or other illness.

If possible, track illnesses in Electronic Medical Records

Report infectious disease to state as mandated

Educate the school community on PANS/PANDAS.

Share information via newsletter, website, meetings, in staff meetings, etc.

Refer students to their primary care provider if you suspect PANS/PANDAS

Provide emotional support to parents and student

Accept emotions as valid

Provide referral to support group and resources - online or in-person

Provide anticipatory guidance

Be patient. Parents are inundated with information

Remember parents are experiencing high levels of stress
Emotional, financial, from school, etc.

Request for Notice of Infectious Illness & Impact of Illness

Students with PANDAS/ PANS may experience symptoms simply from being exposed to an infection. It is vital for the School Nurse to foster communication between the entire school population about who and when someone has an infectious illness.

School Nurses should send out letters that Request for Notice of Infectious Illness to the school community or to a specific classroom and set of staff that is in direct contact with the student.
Examples of Notification of Illness - Strep Letters
Request for Notice of Infectious Illness Letter

The letter can include information regarding the Impact of Illness that strep, flu, coxsackie, walking pneumonia, etc. has on a particular student within the community. You can simply state that a student has an autoimmune disease that is exacerbated by a myriad of infectious diseases.

Include information on why it is important to receive treatment, when a student may return to school, and how to prevent its spread.

This information in this letter does not violate privacy laws when the notice identifies no students.

Inform Parents of PANS/PANDAS Student

Inform parents if there is an episode of strep or other infectious illness in the classroom.

It is not necessary to inform parents which student has an infectious illness, just that there is x number of cases. The teacher often knows why the child was out, not the School Nurse.

If a teacher has been diagnosed with strep, this, too, should also be communicated. This would include art, gym, guidance, etc.

This information in this letter does not violate privacy laws when the notice identifies no students and opens with a generic statement such as, "Your child may have been exposed to strep throat."

Provide Ways to Reduce Spread of Infection

Encourage communication of illness in the classroom

Notification of Illness letter

Communicate with the teacher about high incidences of illness

Review classroom seating

Review proper handwashing techniques

Encourage frequent hand washing or use of hand sanitizer

Limit sharing of supplies

Encourage frequent cleaning of student's area and supplies
student can be responsible for cleaning if developmentally appropriate

Individualized Health Care Plan - IHP/IHCP

"An individualized health care plan is a detailed and orderly program of action designed to monitor, prevent, reduce or eliminate identified health problems in order to maintain or improve a student's health status and level of wellness and to promote his or her learning and positive coping. The process of planning requires a team approach and includes the establishment of care priorities, a clear understanding of student-specific goals, prescription of appropriate interventions, and delineation of measurements for goal achievement." - National Association of School Nurses

The Individualized Healthcare Plan (IHP/IHCP) is a healthcare plan adapted for the school setting.

An IHP/IHCP provides the framework to ensure the school addresses a student's medical needs correctly during the school day. Need for IHP/IHCP is contingent on a student's need for nursing care at school or during a school activity. It is not based upon educational needs addressed in 504 or IEP plan. Students with an IHP/IHCP may need an emergency care plan (ECP) also. An IHP/IHCP may be included in an Individualized Education Program (IEP) or 504 Plan.

The IHP/IHCP is developed by the school nurse with the parents, student (if appropriate), relevant school personnel, and the student's healthcare provider/s. An IHP/IHCP will contain information on the student's condition and health needs. It will list who is responsible for monitoring specific health needs at school and during transport to and from school, field trips, or school-sanctioned after school activities. Proper, proactive planning by school officials and parents of a detailed IHP/IHCP can help to keep a student with special health needs safe at school and during school activities.

Open communication is needed during the development of the IHP/IHCP between parents/guardians, administrators, teachers, and the school nurse. Students who are an appropriate developmental age should participate in developing the IHP/IHCP.
Parents Should Bring to an IHP/IHCP Development Meeting

Contact information of the primary doctor and specialists.

Sign waivers for school and doctors to communicate with each other as necessary.

Doctor's orders and other instructional materials

Information regarding the child's condition and healthcare needs.

Individual Health Care Plans Should
Many factors need to be included when developing an individualized healthcare plan. It is important to remember that this plan applies uniquely to this student and the current issue they are dealing with.

Create solutions to potential health problems that can occur in a school environment to ensure the school is a safe environment that helps students learn.

Consider the student's whole day and what exemptions and accommodations need to be made in different situations. Classroom, lunch/recess, transportation, field trips, physical education, extracurricular activities

Include Nursing Diagnosis - Functional health issues

Include Objectives/Goals for the student to promote self-care and age-appropriate independence.

Ensure that the school has relevant information and authorization regarding medical information about student

Address both family and school concerns

Clarify roles and responsibilities

Establish a basis for ongoing teamwork, communication, & evaluation

Note that:

Medications may change frequently. Educate parents on what forms they need to have filled out to make med changes legally

Getting to know the student is important

Learn and utilize student's calming strategies

Note obsessions/compulsions and tics

Pain may manifest in different forms or body locations.

Symptoms can vary from flare to flare, so all plans may need frequent revising. student's expressive language may make it difficult for them to communicate with you.

Individual Health Care Plans Considerations for PANS/PANDAS Students

Dietary Restrictions

Parents may send, but the school may need to provide alternatives as well

If needed, seek a substitution form for disability-related substitution requests

Frequent breaks

Create a safe and quiet place

Have a system in place for student to request or for staff to determine need

Infection control

Practice and reinforced handwashing protocol

Demonstrate and encourage cleaning routines for classroom/workspace

Develop a process for notifying staff and parents of communicable illness.

Allow student to go home even if no visible signs of sickness (For example PANS/PANDAS patients often do not mount a fever)

Frequent communication with parents

Obtain available orders for treatment for symptoms
Current medication list, ice packs, sensory needs, etc

Sample Individualized Health Care Plan IHP/IHCP

Not all accommodations (considerations) are appropriate for every child. The information in the following sample IHP/IHCP is pulled from the IHP/IHCPs of several PANS/PANDAS students but does not include every possible consideration. IHP/IHCPs should be written on individual student's needs.
ASPIRE IHP IHCP Sample Handout PD ASPIRE School Nurse Information Packet Sources:
Register with ASPIRE to download the PANS PANDAS School Nurse Overview information packet and share this page.

PANDAS in the School Setting, Kathy O'Rourke, MA, School Nurse News, 2003

Is It PANS, CANS, or PANDAS?: Neuropsychiatric Pediatric Disorders That Are Not Black and White-Implications for the School Nurse. Kathy Bagian, MSN, RN, CSN, Sheila Q. Hartung, Ph.D., RN, NASN School Nurse, 30(2), 96-104

PANDAS/PANS Standards of Care Summit: The Role of the School Nurse. Jessica Gerdes, School Health ISBE and Teresa Schindler, School Nurse SASED

PANS PANDAS at School
Learn more about PANS PANDAS in the school setting. PANS PANDAS is a medical condition in which symptoms affect a student's ability to attend school and learn.
School In-Service
Register for a School In-Service on PANS PANDAS
Handouts & Brochures
Return to Section:

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School Nurses play an integral role in the health of students. School nurses support students and student health every day of the year. Children with PANS/PANDAS have complex physical and mental health conditions that benefit from the support of a school nurse. Share directly from this page or download it to email or print.

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US Resource- Aspire : Impact of PANS on attendance

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US Resource- Aspire : Impact of PANS on attendance

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PANS can significantly impact a student's attendance.

School refusal is seen in probably 90-100% of PANS students often due to separation anxiety and OCD. In a qualitative study, half of the PANS students were placed in home-hospital services or were homeschooled(1). 50% of children spend time on home instruction or are removed to homeschool or home/hospital temporarily or permanently. 35% of the parents who took part in the UK PANS PANDAS survey in 2020, reported that their child had had more than 6 months off school(2). The main reasons PANS students miss school are separation anxiety, OCD, sleep disturbances, fatigue, immune and health issues, and doctor's appointments.

No matter the length of time a student misses school, communication between families, school professionals, and medical professionals is essential to making sure the student's needs are met. Remember a student's functioning may change rapidly thus requiring a smooth and quick transition in and out of services. Attendance accommodations should include allowances for absences, late arrival, and early dismissal. Modifying class schedules should be considered on an as-needed basis. Explore flexible supports that weave together partial school day schedules, online learning, and in-home tutoring during times of acute exacerbations. School staff should explain district and/or state policies regarding attendance issues so parents can attain proper medical documentation describing how the student's PANS symptoms cause attendance issues.

Planning teams should create reentry plans for those who have missed a significant amount of time. Do not assume a student is back to normal functioning just because they are attending school. Pushing too hard normalcy may result in a backslide.

Nature of Illness PANS patients are immunocompromised and may need to be out of school to avoid exposure to infections like strep or flu. Fatigue and stamina also significantly impact attendance. For example, one child may be able to handle two straight full days of school but physically unable to attend the next two while another student can make it every day but may only be able to attend morning classes and a third student may miss extended periods of time completely due to fatigue and other symptoms. Sleep disturbances due to OCD, anxiety, and REM sleep abnormalities are seen in almost all PANS patients resulting in exhausted students.

Separation Anxiety, OCD, Depression, Aggression Separation Anxiety and OCD are both major criteria for PANS. Separation anxiety can prevent a child from attending school or from attending a full day. OCD rituals can prevent a student from being able to leave the house at all or on time. Depression and Aggression, two other symptoms of PANS PANDAS, can also greatly impact a student's ability to attend school.

Doctor Appointments and Treatments Some PANS students have a large clinical team requiring many doctor and therapist visits while others have a small team. Some treatments require students to miss several days of school. Immune-related therapies, such as IVIG or plasmapheresis, take several days per round and often require several to monthly rounds to complete. Severely impacted patients may require hospitalization.
1: Families' experiences with PANDAS and related disorders - Patricia Rice Doran and Elizabeth O'Hanlon, Towson University.
2: PANS PANDAS UK 202 Parent Survery

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PANS Significantly Impacts Attendance - Aspire

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No matter the length of time a student misses school, communication between families, school professionals and medical professionals is essential to making sure the student's needs are met. Remember a student's functioning may change rapidly thus, requiring a smooth and quick transition in and out of services.

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US Resource from 2019.  Advocating for your child in an Educational Setting.  Shara Virlan

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US Resource from 2019.  Advocating for your child in an Educational Setting.  Shara Virlan

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Foundation for Children With Neuroimmune Disorders

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Advocating For Your Child With PANS/PANDAS  in an Educational Setting

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US Resource New England PANS/PANDAS Association- School Resources

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US Resource New England PANS/PANDAS Association- School Resources

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NEPANS provides information for parents, educators, school nurses, and administrators on PANS PANDAS in the School setting including accommodations, signs and symptoms of the disease, and resources.

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US Resource : PANDAS Network School Resources

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US Resource : PANDAS Network School Resources

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Do you want to learn more about working with children with PANS/PANDAS in school? Participate in this free 90 minute online seminar and answer the brief pretest, posttest, and follow up survey to provide research to help improve the seminar. The survey link can be found here: PANS online training flyer

Below we've provided some printables that you can download (downloadable PDFs) and use to help educate and promote awareness of PANDAS. These are multi-page documents, so after you click on the link to open, click on the document to view all pages.

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Do you want to learn more about working with children with PANS/PANDAS in school? Participate in this free 90 minute online seminar and answer the brief pretest, posttest, and follow up survey to provide research to help improve the seminar.

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PANDAS Network- Fact sheet for School Nurses

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PANDAS Network- Fact sheet for School Nurses

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Aspire : Sensory and Motor Abnormalities

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Aspire : Sensory and Motor Abnormalities

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Sensory & Motor Abnormalities are one of the main PANS PANDAS symptom categories

In PANS, sensory and motor abnormalities both fall into one of the seven categories of the PANS diagnostic criteria. In PANDAS, motor and vocal tics are one of the two major symptoms of the diagnostic criteria, along with OCD. Tics are not required for either diagnosis. See more about PANS PANDAS Symptoms. PANS/PANDAS is not the same as traditional OCD or a tic disorder; the onset and concurrent symptoms and, in some cases, the severity of the OCD set these disorders apart.

Motor Abnormalities

Motor Abnormalities Overview

Like all PANS PANDAS symptoms, motor abnormalities can look different from patient to patient.

Tics - motor and vocal
Can have a dual diagnosis of Tourette's Syndrome

Choreiform movements, i.e., piano fingers.
Not large chorea movements as seen in Sydenham chorea

Hyperactivity

Akathisia - A movement disorder that makes it difficult to stay still and causes urges to move that are not controllable.
Examples are fidgeting, pacing, rock back and forth, crossing and uncrossing legs, or just an uneasy feeling in the body, etc

Dysgraphia - Handwriting Deterioration

Tics - Motor & Vocal

Tics are sudden, repetitive, involuntary twitches, movements, or sounds. People who have tics cannot stop themselves from doing these movements or sounds. There are two types of tics, motor and vocal, and tics can be simple or complex. Severity can range from mild to severe; severe tics may interfere with daily functioning and communication. Complex tics that are severe and debilitating are characteristic of the tics seen in PANS PANDAS. Tics that proceeded PANS PANDAS onset would not qualify as a meeting the criteria, but preexisting tics that suddenly worsened may qualify. Before the onset of a motor or vocal tic, one may experience an uncomfortable bodily sensation often referred to as a premonitory urge, such as tension, a tingle, or an itch. Some can suppress tics briefly, which causes intensediscomfort only relieved by performing the tic/s.

Vocal Tics: repeating phrases, sounds or words, grunting, coughing, hiccupping, humming, throat clearing, yelling a word or phrase, sniffing, clicking noises, squeaking, squealing, whistling, swearing, imitating sounds or words

Motor Tics: A series of repetitive movements in the same order involving several muscle groups, twitching, flinching, head-jerking, eye-blinking or eye-rolling grimacing, shrugging shoulders, jerking an arm, mouth movements, clapping, imitating movements, rude gestures

Simple Tics: Quick, less repetitive movements involving fewer muscles or muscle groups or making a single sound.
Simple Motor Tics - squinting eyes, sniffing, head jerking, nose twitching.
Simple Verbal Tics - barking, throat clearing, a single squeal, coughing, grunting

Complex Tics: Moving several different parts of a body using several muscle groups often with a pattern.
Complex Motor Tics - hopping, jumping, spinning, twisting or bending, gestures, smelling our touching objects.
Complex Verbal Tics - repeating your own or someone else's words for phrases, obscene words or phrases, mimicking sounds. Can have a combination of Complex verbal and motor tics.

Tourette Disorder: One can have a dual diagnosis of Tourette Disorder and PANS/PANDAS.

Tourette Disorder diagnostic criteria:

At least one vocal tic and two or more motor tics, although not necessarily at the same time

Tics occur several times a day, nearly every day or intermittently, for more than a year

Tics begin before age 18

Not caused by medications, other substances, or another medical condition like seizures, postviral encephalitis, Huntington disease

Tics must change over time in location, frequency, type, complexity, or severity

Related Articles:
Dr. Swedo on Tourette Syndrome & PANS Tourette Syndrome & PANS Overlap
Choreiform movements

Chroreiform movements seen in PANS PANDAS are different from choreaform movements of Sydenham chorea. Doctors must correctly evaluate involuntary purposeless and uncontrollable movements because if a patient has choreaform movements, then they should consider a diagnosis of Sydenham chorea. Choreiform movements are characterized as fine involuntary finger movements that look like one is gently playing piano when their arms are stretched out in front of them. Choreaform movements are described as jerky or writhing, arrhythmic, involuntary movements of the extremities, trunk, and facial muscles

Dysgraphia - Handwriting Deterioration

A change in handwriting may consist of, but is not limited to, not being able to write on the lines, poor formation of letters and numbers, reverse letters and numbers (after 2nd grade), poor spacing between numbers, letters, and words, or writing is too large. Margin Drift is also seen.

Sensory Abnormalities

Sensory Processing Overview

Some PANS PANDAS patients have sudden sensory avoidance symptoms while others have sensory-seeking behaviors.

Sensory processing is when the nervous system cannot correctly receive messages from the senses or is unable to provide the appropriate behavioral or motor response. Difficulty in processing sensations creates challenges in every task, creating issues with pain, sound, touch, and feeling and can lead to problems that result in behavior issues, anxiety, depression, and many issues with school work and daily living. Some over-respond (sensory avoidance) to sensations while others may under-respond. Over-responders (sensory seeking) can find even the slightest input, visual or auditory, unbearable. Under-responders may show little to no response to sensory input and be slow to respond to sensation. Hallucinations are included under Sensory Processing Abnormalities.

Some Signs of Sensory Processing Abnormalities:

Food refusal - certain textures or smells are refused (see more about PANS & Restrictive Eating)

Extreme irritability when wearing certain clothes

Resistant to cuddling. Infants arch and pull away from people holding them.

Unaware they have bumped into objects unless done with force

Slow to respond to pain

Overly sensitive to stimulation: touch, noise, smells, etc

Constantly in motion, body moving, running constantly

Craves roughhousing

Uses inappropriate force to handle objects

Hypotonia - Slouches in chairs. Looks floppy.

Difficulty playing with toys requiring dexterity

Difficulty learning new motor skills

Handwriting skills are difficult

Babies have difficulty self-soothing

Clumsy - Doesn't have a good sense of the relationship between body and space around them.

Slow to perform tasks

Hallucinations

Patients with PANS PANDAS can have visual hallucinations. These typically manifest as objects that move or change size or as frightening images. Often hallucinations last for a brief period but can last for hours or longer.

According to Dr. Frankovich*, 36% of PANS patients have visual and/or auditory hallucinations. These patients are predominately dealing with higher disease severity. Hallucinations are transient in 83% of those patients. Hallucinations present as non-threatening voices/figures, 6% have delusions, and 6% have thought disorganization. Hallucinations cause a higher caregiver burden.

*As per Dr. Frankovich- SANE conference lecture 2019

Return to PANS PANDAS Symptoms
PANS Symptoms
Return to PANS PANDAS Diagnostic Criteria

PANS PANDAS Criteria

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Sensory & Motor Abnormalities & Tics in PANS PANDAS - Aspire

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Sensory & Motor Abnormalities are one of the main PANS PANDAS symptom categories In PANS, sensory and motor abnormalities both fall into one of the seven categories of the PANS diagnostic criteria. In PANDAS, motor and vocal tics are one of the two major symptoms of the diagnostic criteria, along with OCD.

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Fine Motor Skills & Handwriting Deterioration in PANS PANDAS - Aspire

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Aspire : Development and Retention of Fine Motor skills and Handwriting deterioration in PANS and PANDAS

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Aspire : Development and Retention of Fine Motor skills and Handwriting deterioration in PANS and PANDAS

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Development and Retention of Fine Motor and Handwriting Skills

By Jennifer Leiman M.S. OTR/L

PANS PANDAS can affect many aspects of daily functioning. One of the categories of the PANS diagnostic criteria is Decline in Academic Skills. This category of symptoms includes a wide range of functional skills, including a decline in handwriting abilities and fine motor skills. A change in handwriting may consist of, but is not limited to, not being able to write on the lines, poor formation of letters and numbers, reverse letters and numbers (after 2nd grade), poor spacing between numbers, letters, and words, or writing is too large. A decline in academic skills or handwriting abilities can be a symptom of PANS PANDAS but they are not required for a diagnosis as OCD or restrictive eating in addition to only two out of seven categories is required. (See Symptoms and Diagnosing.)

Developmentally, a child begins to learn pre-writing strokes-drawing lines and copying simple shapes-in preschool. Once in kindergarten, a child is ready to learn how to write capital letters, followed by lower-case letters. However, in recent years there has been a push for students to begin these skills earlier. Unfortunately, learning earlier can result in poor habits as it relates to pencil grasp and formation of letters-no matter a child's abilities and neurodiversities.

Traditionally, a school-based occupational therapist (OT) in elementary school will focus on improving hand strength (fine motor skills) and drawing and writing skills (visual motor and perceptual skills), as well as regulating sensory processing skills, which can impact a student's ability to access their education. When a school or family recognizes a child is struggling with these skills beyond the scope of their peers, an OT is brought onto the team. Prior to a complete OT evaluation, a therapist may observe the student and suggest in-the-moment tools to support the mechanics of writing. These can include but are not limited to pencil grips, slant boards, pencil weights and alternative paper. (See more about PANS PANDAS and Occupational Therapy.)

When a child develops PANS/PANDAS prior to their writing skills development, a solid foundation of writing mechanics becomes a vital component for future development of good handwriting skills. If PANS PANDAS starts before or around the time of handwriting development, one may not observe a decline in handwriting abilities. Thus, later one might assume that the student simply has poor handwriting skills, but it is critical to provide them with remedial support to develop these skills. So, even if a student is not in a flare but has poor handwriting skills, it is essential to remember this deficit might be attributed to PANS PANDAS.

If a student develops PANS/PANDAS after they have learned to write, there may be a need to recoup some of these skills throughout or after the flare has resolved. Due to PANS PANDAS' disease course, therapeutic intervention may not be effective during a flare, so increased adaptations and supports during the flare followed by remedial interventions to resolve persistent handwriting and fine motor issues may be more appropriate. This can be accomplished through adaptive and supportive tools through the student's teacher or case manager (if they have one). Please refer to the chart below for additional suggestions.

Deterioration of Fine Motor and Handwriting Skills in PANS PANDAS

This graphic exhibits a classic example of the deterioration of fine motor skills and handwriting changes in PANS PANDAS. Before the onset of PANS PANDAS, this student's handwriting was precise and clear. After the onset of PANS PANDAS, there is a marked deterioration in the same student's handwriting skills. It is barely legible, no longer neat and precise. Plus, the student is hardly able to apply enough pressure to make marks on the paper.

Occupational Therapy for PANS PANDAS

For more information about how Occupational Therapy can benefit those with PANS PANDAS see the linked page below.
Occupational Therapy For PANS PANDAS
About Jennifer Leiman M.S. OTR/L

Who I Am My name is Jennifer Leiman. I have been a treating occupational therapist (OT) for about 20 years, and have spent my entire time in pediatrics. I have a wide range of skills with a current focus on implementing strategies for improved legibility, executive function and sensory tools within the structure of a school based setting. I'm also a certified executive function coach. My husband and I live in northern NJ with our two young children. My older son is in middle school and has a diagnosis of Twice Exceptional and my younger daughter is in elementary school with a diagnosis of PANS/Lyme.

My Goal I seek to integrate concrete tools that are child-specific yet appropriate for the entire classroom dynamic. I have also developed easy and effective handwriting and organizational strategies, striving to assist students and the classroom staff in achieving a student's OT goals.

My Therapy Approach I believe in a student-focused, holistic approach, treating your children as if they were my own. I accomplish this by working collaboratively with students, teachers and parents to help each student achieve their greatest potential.

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Fine Motor Skills & Handwriting Deterioration in PANS PANDAS - Aspire

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Development and Retention of Fine Motor and Handwriting Skills By Jennifer Leiman M.S. OTR/L PANS PANDAS can affect many aspects of daily functioning. One of the categories of the PANS diagnostic criteria is Decline in Academic Skills. This category of symptoms includes a wide range of functional skills, including a decline in handwriting abilities and [...]

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US Resource : PANS/PANDAS in the classroom, Information for Educators

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US Resource : PANS/PANDAS in the classroom, Information for Educators

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Foundation for Children With Neuroimmune Disorders

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PANDAS PHYSICIANS NETWORK- Considerations for Health care professionals in the Education of PANS-Affected Students - Jamie Candelaria- Greene

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PANDAS PHYSICIANS NETWORK- Considerations for Health care professionals in the Education of PANS-Affected Students - Jamie Candelaria- Greene

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Jamie Candelaria-Greene PhD, BCET

A brilliant scholar, poised to create a fantastical tool that will help save our waterways and oceans from collapse; a gifted newspaper reporter, bringing cherished dispatches to his community; an astute, prize-winning filmmaker, bringing attention to critical stories of the day; a medaled long distance runner and community volunteer, who shifts effortlessly between mathematical proofs and prose- These are just a few of the stellar twenty-somethings that bring humanity hope as we enter the era that will likely be referred to as 'the time of the pandemic.' They are also- just a few- of the heroic survivors of that chaotic netherworld known as PANS.

As a practitioner and historian of Special Education, I write this at a time when there are multiple, and significant, turning points in the care of young people with Pediatric Acute-onset Neuropsychiatric Syndromes (PANS). Of course, the most pressing issue in our midst surrounds the COVID-19 pandemic- touching every aspect of our lives, including the safety, timeliness, modes, and delivery of both health care and educational services. At the same time, this pandemic has arrived when we know far more about the mechanism and effective treatments of PANS than we did, even a few years ago.[i] [ii] [iii] Research in parallel lines of inquiry has similarly bolstered the hope of reversing neural dysfunction and mental illnesses that were once thought of as irreversible.[iv] [v] Moreover, in the field of Education, along with comprehensive guidebooks,[vi] there have been two recent works (The PANS-Network Education Toolkit, and the equally excellent 90 minute on-line tutorial from the University of Buffalo)[vii] that bring targeted guidance to providers, families, and schools on the educational care of PANS-affected students. Perhaps the most golden finding of all, however, is that we know far more about the course of PANS in young people who, once treated, have then grown up to be functioning, well-adjusted, and independent adults.[viii] As evidenced by the stalwart survivors above, we now have ample, living proof that with appropriate medical treatment, these young people can be placed 'back in their lives' again,[ix] and assume the authentic trajectories they were always meant to have.

In this overview, I will describe PANS' effects on the student's ability to participate in his academic world, both in 'ordinary times,' and in the age of the COVID-19. I will also highlight the critical role of health care professionals as they advocate for their patients in the schools. However, first, I will describe how the emergence of this one condition has ultimately served to shatter long held pedagogical assumptions regarding how we teach- and perceive- individuals with educational challenges.
THE UNIQUE SYMPTOMATOLOGY AND PRESENTATION OF PANS IN STUDENTS
Historically, PANS' symptomatology represents a phenomenon that few educators in Special Education, much less Education, have ever seen before. Specifically, since the advent of Special Education programs in the 1960's in the U.S. and abroad, the debilitations, needs, and behaviors of PANS-affected students emerge as distinct in three ways:[x]

First, in the experience of most educators, the degree to which PANS-stricken students are affected by this disability is far less stable over time than what is usually seen with other students. For example, educators do not ordinarily expect a student's printing ability to go from a third-grade level to a first-grade level in the span of a week, and then a month or two later, return back to a third-grade level.

Secondly, most students- even in Special Education- rarely suffer such significant debilitation in so many functional domains. Yet (and predictably), PANS-induced inflammation in the basal ganglia, along with cytokine-induced sickness behaviors,[xi] will result in the very symptoms cited in the diagnostic model of PANS itself: "anxiety, emotional lability and/or depression, irritability, aggression and/or severely oppositional behaviors, behavioral (developmental) regression, deterioration in school performance, sensory or motor abnormalities, and somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency".[xii] Alone and in combination, PANS thwarts the very elements needed to flourish in the learning environment: the ability to remember, sustain attention, organize, and plan; behave and communicate in age-appropriate ways, complete tasks that require expected fine and gross motor capabilities, etc.[xiii]

Thirdly, PANS, once and forever, banishes the common pedagogical assumption that every student will generally progress on an 'onward and upward path'- developmentally, intellectually, motorically, and socially. The calling card of PANS, in contrast to this generally sustained, steady, academic trajectory, results instead in jagged levels of dysfunction; but equally as striking, also improvement (and for many, full recovery) of functioning over time, once given appropriate medical treatment.[xiv] [xv]

In sum, in its stunning depth and breadth of characteristics; erratic waxing and waning nature; and jagged descent and potential for full recovery, the presence of PANS in the classroom has broadened pedagogical assumptions and practices in the following ways: Educators now more readily acknowledge the phenomena of jagged levels of dysfunction and improvement across the functional domains (for both known and unknown reasons). Next, there is greater awareness that for some students, their actual knowledge of subject matter will not be equivalent to what they actually know, but rather, what they are able to demonstrate, given, as in the case of PANS, the constraints imposed by brain inflammation and 'sickness behaviors.'[xvi] Moreover, there is greater acknowledgement that students' medical illnesses are not just limited to physical symptoms only. Most significantly, the emergence of PANS in the schools has facilitated far greater awareness that behavioral/learning/emotional issues can have medical causes at their root. Accordingly, there is recognition that without the application of appropriate medical care, the efficacy of any other therapies (including educational services) may be limited, unlikely to help, and even be counterproductive.
COLLABORATION WITH THE SCHOOLS
In ordinary times and in ideal academic settings, the collaboration between the health care provider and the school might look like this: First, the provider would speak candidly with the parent and the patient[xvii] about issues that are seen to affect (or even might be affecting[xviii]) the patient's education and wellbeing. The provider would then, with the agreement and collaboration of the parent and/or patient, communicate in writing to the patient's school, college, or university.[xix] This document would usually include the diagnosis, and pertinent medical information surrounding the health of this patient (such as related diagnoses, status of treatment, medications, dietary restrictions, allergies, etc. ). It would also include any symptomatology that is known or suspected to affect the student's ability to obtain an appropriate education.[xx]

This discussion might include questions such as, "Currently, how does this young person...?"

Demonstrate age appropriate self-care and daily living skills surrounding grooming, transportation, nighttime routines, eating, etc.? (How long is it taking for the student to carry out grooming activities, such as bathing, dressing, and tooth brushing? Does the student experience upset, anxieties, or sensory overwhelm while traveling, etc.?)

Adapt to transitions and stresses common in the educational, home, and other environments, including, or involving, decision-making, attendance, scheduling, and interactions with others?[xxi]

Follow, understand, and remember written, oral, and visual information (and combinations of the three)?

Sleep and eat in ways that produce required levels of wakefulness and nutritional intake, respectively?

Maintain prior levels of urinary frequency during the day and night? How do these levels compare with peers?

Experience sensory overwhelm to light, sounds, textures, odors, etc.?

Maintain social relationships. (In what ways has his or her social life changed or stayed the same?)

Communicate effectively with others, and interact and behave in ways that are age-appropriate?

Maintain prior levels of mental and physical stamina and coordination, (independently and in group activities)?

Sustain focused attention (on non-stimulating, 'non-fun' tasks) for longer than 10 minutes?

Complete chores and educational routines (i.e. homework) in a timely manner?

How is this condition affecting the rest of family? Is the parent concerned over the child's safety, or the safety of those around him? Is the parent concerned about how the patient's behaviors are being interpreted at school?[xxii]

And, of course, acquire and demonstrate academic knowledge (indicating the degree to which s/he may need additional assistance, direction, and time to learn and to participate in an academic setting)?[xxiii]

The responses to the above questions will go far to document the types of limitations that will determine the scope of assessments, services, accommodations, adjustments, and modifications that the student may receive through educational institutions.[xxiv] Just as importantly, it will bring critical attention to everyone involved, that in this case, it is a medical condition, (and not a specific learning disability, poor student attitude, weak parenting skills, etc.) that is primarily responsible for current levels of academic performance, behavior, and attention.[xxv] The provider may also specifically point out recommendations (based on symptomatology) that would be appropriate (or even inappropriate) for this student, such as a part time school day, home hospital instruction, in-class assistance from an aide, testing accommodations; and in college, separate living quarters, etc.

Based on communications brought forth by the medical provider, the school may then initiate assessments to further determine levels of needs and services. In some cases, a student's testing abilities may be limited due to the constraints of the illness itself (such as thwarted energy levels, etc.). Moreover, many postsecondary settings are not required to offer testing, and, of course, during the current pandemic, assessments may not be feasible. In such circumstances, the provider's letter may often suffice to make adjustments to the student's educational plan, without additional evaluations. Otherwise, the following assessments may be initiated:[xxvi]

1. A school nursing plan, so that the district nurse can evaluate and monitor aspects of nursing needs related to PANS and the student's education. The School Nurse would also collaborate with the family and other team members on assessments and services related to parameters of the student's physical health and mental health diagnoses, status of energy, stamina, affect, and mood, and unintended/non-purposeful physical movements and utterances, such as tics.

2. A psycho-educational evaluation, to determine present levels of processing strengths and weaknesses (such as in the areas of perceptual reasoning; processing speed; visual and auditory memory (separately, together, and sustained), etc.

3. Evaluations in specific areas of visual processing,[xxvii] to include visual analysis, discrimination, analysis/synthesis, short term, long term, and working memory, visual-spatial orientation, and scanning.

4. Evaluations to determine levels of functional behavior, social/emotional development, and executive functioning.

5. Assessments to determine the need for psychiatric and counseling referrals (for both student ), and to address any reported symptoms of anxiety, Obsessive Compulsive Disorder, emotional lability and/or depression, irritability, aggression and/or severely oppositional behaviors, and behavioral and developmental regression.

6. Assessments to determine present levels of academic skills and achievement, such as in reading, math, and writing.

7. Evaluations to evaluate fine motor weaknesses, (including handwriting difficulties), appropriate Assistive Technology applications, levels of skills of daily living (including grooming, dressing, and eating), and current levels of sensory integration, dysfunction, or overwhelm, and proprioception and vestibular issues.

8. Evaluations to determine levels of gross motor ability, and the need for Adapted Physical Education to manage symptoms of poor coordination, hypoactivity, hyperactivity, and to facilitate the student's participation in recess, on field trips, and in group sports.

9. Evaluations by a Speech and Language Pathologist to determine (verbal and non-verbal) receptive and expressive language abilities, oral motor abilities, articulation, social pragmatics, non-purposeful vocalizations or tics., etc.

The results of these evaluations will signal appropriate services related to this student's areas of need. These can include, but are not limited to, supports, assistance, and therapies in the areas of organization, attention, memory, fine motor and gross motor skills, visual processing, and result in services for speech and language, school nursing, counseling, and math, reading, and literacy supports. Moreover, 'Home Hospital' instruction may also be warranted, where an instructor comes to the home.

Accommodations/Adjustments/and Modifications are specific to the student's needs, and can include a broad array of measures. A very few include: Testing accommodations (such as extended time on tests and testing in a distractive free environment), prioritization of assigned work to show competence, especially during PANS flares, Assistive Technology to accommodate for fine motor and processing speed weaknesses, a scribe, attendance modifications, a modified school day, the accompaniment of a service animal, and devices to assist with sensory overwhelm, etc. At the post-secondary level, accommodations might also include accommodations for Priority Registration for upcoming classes, extra time on 'short turn around' assignments, single dorm rooms, etc.).

It is also important that medical providers are aware of local, state or provincial, and national governmental policies that determine access to health services for their patients. In the U.S., for example, a 'Free and Appropriate Public Education' (FAPE) is mandated for every child; however, 'free and appropriate public health care' is not. This carries special significance for PANS-affected students, regarding not only the delivery of educational services, but also of 'designated instructional services' (such as speech therapy, counseling, etc.). By law, U.S. schools must provide an 'appropriate' education to every student, regardless of the severity or breadth of his needs.[xxix] This holds true, whether the student is being appropriately medically treated for PANS, or whether the student is not (but still having associated symptoms being played out in the classroom). Schools must also provide supportive services and therapies, whether or not the family has the resources to provide them on their own. In their communications with the schools then, U.S. providers should be mindful of the weight that their communications hold in validating the need for these assessments and services, as they may be otherwise unobtainable elsewhere.
PANS, EDUCATION, AND COVID-19
...However, these are not ordinary times. As we face special challenges surrounding the COVID-19 pandemic, here are a few highlights to consider:

Families and providers who have long dealt with the phenomena of PANS will recognize the devastating neuropsychiatric outcomes that can result from pathogens. Emerging information on the COVID-19 also suggests that like PANS, a delayed and powerful immune response can be involved[xxx] and that like PANS, the individual, along with his 'vector,' may be totally asymptomatic of the pathogen that precipitates this onslaught. As a result, the school environment must be mindful of safety surrounding both PANS and COVID-19.

In collaboration with the parent, and the patient as appropriate, the provider may consider the following:[xxxi]

1. Many of our students will continue to receive what is called Distance Learning (involving virtual teaching platforms, workbooks, phone calls, and other non in-person communications, to continue education during school closures. In the US, IDEA provides that Distance Learning may be an option for a student with a disabling condition or illness that warrants a physical absence from school.

2. As certain types of assessments will be limited due to distancing precautions, the health provider's role in identifying limitations associated with this student's illness will be paramount. Such information will help facilitate or confirm the need and modes for educational services. He or she will also be an important point of contact regarding the documentation of worsening symptoms (that can warrant additional needs or services from the school, such as counseling, etc.). Moreover, the provider may cite the need for extended periods of Distance Learning for the student after the current COVID-19 crisis lightens up- even for siblings who may bring the illness home to the vulnerable student.

3. The wearing of a face mask may be exempted for students who, because of their disability's limitations (directly related to symptoms, age, or hearing/communication impairment, etc. ) may make them otherwise unable to wear a mask.

4. 'Compensatory education' may be appropriate for students once they resume their education, to help them 'catch-up'.

5. Educational meetings in the US (such as IEP's, Individualized Family Service Plans (IFSPs) Addendum meetings, Transition Plans, etc.) should continue according to stated timelines. However, they may be held virtually or by telephone, for example, when needed.

6. With the parent, establish a main point of school contact during Distance-Learning and Shelter in Place periods.

7. Identify public health guidelines that will directly affect services and modes of education, transportation, etc.

8. In collaboration with the parent, your feedback on the efficacy of in-class learning, Hybrid Learning, and Distance Learning for your patient will be important. Safety, of course, is the number one priority. Even after the current pandemic crisis subsides, issues surrounding the needs of anyone vulnerable to infection may continue to warrant some levels of Distance Learning. At the same time, programs used in Distance Learning require adequate levels of executive functioning and sustained attention to be effective. As these are abilities our students often struggle with, there may need to be someone from the school to help facilitate this student's progress in certain online programs (such as in math, etc.).[xxxii]

IN CLOSING
In closing, I would leave health care providers with this final sentiment: There is a scene at the end of the classic film, Apocalypse Now, where the one remaining soldier stands apart; disconnected from reality and oblivious to the deadly peril that surrounds him. The Martin Sheen character finds this young man, and recognizing his altered state, gently, and without judgment, leads him calmly out of the chaos into safety. Similarly, while suffering through its worst manifestations, many PANS-stricken young people have little awareness of how dangerously close to peril they can become, especially during times of acute anxiety and debilitation. It will be those unsung health care providers who take these young sufferers' hands, and lead them out of the chaos into refuges of safety. It is their letters, communications, and collaboration with families and schools, that will elucidate, and validate, that it is ultimately a medical condition that is responsible for this student's altered learning ability and behavior. Their life-changing words and actions will forever alter the trajectories of these irreplaceable young people- no less than those healers who profoundly changed the lives of the writer, the film maker, the inventor, and the mathematician at the beginning of our story. For these fragile young people, it will be the health care providers' compassionate care and expertise that will secure a safe passage from illness to wellness. Once there- and back to their authentic selves- they will progress onward and upward, on their own.

Dr. Candelaria-Greene is a researcher, educator, and clinician in Special Education in the San Francisco Bay Area. She has been a major collaborator with the 'PANDAS Network Working Group on Educational Access' since its inception. As a Visiting Researcher Scholar at UC Berkeley (2013-2015), she investigated the effects of PANS on learning and behavior. Her findings led to the book, "PANS, CANS, and Automobiles: A Comprehensive Reference Guide for Helping Students with PANDAS and PANS." A second edition is forthcoming. Her website can be reached at: drcandelariagreene.com.

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Jamie Candelaria-Greene PhD, BCET A brilliant scholar, poised to create a fantastical tool that will help save our waterways and oceans from collapse; a gifted newspaper reporter, bringing cherished dispatches to his community; an astute, prize-winning filmmaker, bringing attention to critical stories of the day; a medaled long distance runner and community volunteer, who shifts effortlessly between mathematical proofs and prose- These are just a few of the stellar twenty-somethings that bring humanity hope as we enter the era that will likely be referred to as 'the time of the pandemic.'

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US Resource- PANDAS PHYSICIAN'S Network- Have you seen a student with sudden behavioural changes? 

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US Resource- PANDAS PHYSICIAN'S Network- Have you seen a student with sudden behavioural changes? 

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PANDAS/PANS resources for school health professionals.

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International OCD Foundation - Differential diagnosis of OCD or PANDAS/PANS

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International OCD Foundation - Differential diagnosis of OCD or PANDAS/PANS

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If you have a patient presenting with repetitive behaviors and chronic anxiety, it may be obsessive compulsive disorder (OCD) or it may be a subtype of OCD: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus ( PANDAS)/ Pediatric Acute-Onset Neuropsychiatric Syndrome ( PANS). There are recognizable differences between these conditions:

Typically see first onset between 8-12 years old.

Typically affects children between 4-14 years old.

Subclinical symptoms become gradually more severe over time.

Acute, dramatic onset of symptoms.

Experience a wide range of symptoms, cycling between obsessions that cause anxiety and compulsions to reduce it. Common obsessions may include fears of contamination, pathological doubt, unwanted thoughts and/or images of an aggressive, religious, or sexual nature, or the need for symmetry. Common compulsions may involve excessive checking, washing and/or cleaning, or reassurance seeking, counting, ordering, or arranging things.

Sudden, rapid-onset of obsessive-compulsive behavior, as well as possible movement and behavioral abnormalities, including:

Severe separation anxiety

Anorexia or disordered eating

Urinary frequency

Tics and/or purposeless motor movements

Acute handwriting difficulty

There is a probable familial/genetic link and possible involvement of the cortico-striato-pallidothalamic (CSPT) pathway. Chronic avoidance of anxiety-producing stimuli is also seen as a contributing factor.

PANDAS: Hypothesized to be the result of autoimmune antibodies mistakenly attacking the basal ganglia in the brain following a Streptococcus pyogenes (Group A Strep) infection.

PANS: Hypothesized to be the result of autoimmune antibodies mistakenly attacking the basal ganglia in the brain following an infection such as mycoplasma, mononucleosis, Lyme, or H1N1.

Download this table as print-friendly PDF.

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Differential Diagnosis of OCD or PANDAS/PANS - OCD in Kids

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If you have a patient presenting with repetitive behaviors and chronic anxiety, it may be obsessive compulsive disorder (OCD) or it may be a subtype of OCD: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS)/Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). There are recognizable differences between these conditions: Pediatric OCD PANDAS/PANS Age Typically see first onset between...

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US Resource- Virginia Department of Health

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US Resource- Virginia Department of Health

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US Resource, Aspire. This is a link to register and download a schools toolkit resource for children with PANS/PANDAS.

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US Resource, Aspire. This is a link to register and download a schools toolkit resource for children with PANS/PANDAS.

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PANS PANDAS in the School Setting Toolkit Information at your fingertips

Click the button below to download the twenty-page toolkit that provides information on School Impacts and Supports for PANS PANDAS.

Register with ASPIRE to download this information packet.
PANS PANDAS School Impact Toolkit
Learn more about PANS PANDAS in the school setting. PANS PANDAS is a medical condition in which symptoms affect a student's ability to attend school and learn.
PANS PANDAS at School
Learn more about the Scholl Nurse Role for PANS PANDAS and download the updated toolkit!
School Nurses & PANS PANDAS
Register for a School In-Service on PANS PANDAS
School In-Service
Return to Section:
Handouts & Brochures

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Toolkit - PANS PANDAS in the School Setting - Aspire

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PANS PANDAS in the School Setting Toolkit Information at your fingertips Click the button below to download the twenty-page toolkit that provides information on School Impacts and Supports for PANS PANDAS. Register with ASPIRE to download this information packet. PANS PANDAS School Impact Toolkit Learn more about PANS PANDAS in the school setting.

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Sleep disturbances are common in children with PANS and are part of the diagnostic criteria.

See more about the PANS PANDAS Diagnostic Criteria and Symptoms

Some have trouble falling asleep at night, while others have difficulty staying asleep. One cohort from a study from the Stamford PANS Clinic "demonstrated increased onset of REM sleep (median 134 minutes), insomnia (median total sleep time of 389 minutes), and decreased sleep efficiency (77%)."

OCD and Sleep Disturbances

Fears or intrusive thoughts may keep their minds too busy or too anxious to fall asleep.

They may worry that something bad will happen to them or their family while they are asleep. OCD fears and rituals can create hundreds of obstacles to falling or staying asleep. Some children have hour-long bedtime rituals that must be completed before they can go to bed. The need to do compulsions can be so constant that children can't fall asleep. A child may feel she or he has to stay in a certain position all night or count the number of teeth in their mouth a hundred times. Cognitive Behavioral Therapy and Parent Management Techniques may help curb these prolonged behaviors.

Separation Anxiety & Night Terrors

Separation anxiety may also play a role in causing sleep disturbances. PANS children often need someone in the room with them to go to sleep. They may need help calming down or reassurance as they fall asleep. It is not uncommon for parents to stay in the room until their child is sleeping or allow them to sleep in the parent's room or bed. Nightmares and night terrors are also common and can contribute to difficulty sleeping.

Physiological Factors

In addition to fear and anxiety, there may be physiological reasons that children struggle to sleep. Infections and immune activation can adversely impact sleep. Inflammation can decrease serotonin, increase dopamine, and prevent melatonin from being produced.

These neurotransmitter changes can all cause insomnia. Also, many children are in a constant state of fight or flight. They may feel that there is a constant danger, which keeps their system active and alert. There may also be other comorbid medical issues such as reflux or POTS, which can impact sleep for children with PANS.

REM Sleep and Limbic Movement

Many PANS children are unable to suppress movement during sleep which can disrupt REM sleep. Disinhibited movements during sleep include excessive movement, hand stereotypies, laughing, moaning, or periodic limb movements during sleep (PLMS) into REM sleep.

Sleep disturbances in PANS patients happen during the acute phase of the illness but may continue several years after treatment, especially in those in a chronic static state of the disease. These continue sleep disturbances may be a factor in why some patients have prolonged symptomatology.

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Sleep Disturbances in PANS PANDAS - Aspire

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Sleep disturbances are common in children with PANS and are part of the diagnostic criteria. See more about the PANS PANDAS Diagnostic Criteria and Symptoms Some have trouble falling asleep at night, while others have difficulty staying asleep. One cohort from a study from the Stamford PANS Clinic "demonstrated increased onset of REM sleep (median [...]

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Michelle Newby, BHSc(OT), MSc discusses with ASPIRE how occupational therapy helps PANS/PANDAS patients.

Michelle Newby BHSc(OT), MSc, is a PhD Candidate at the University of Newcastle, NSW, Australia. She is also an Occupational Therapist and the Director of Stepping Stones Therapy for Children in Newcastle, NSW, Australia
Occupational Therapy for PANS/PANDAS
Occupational therapists are health professionals who work to maximize a person's independence and participation in their life, and in the case of children, in a nutshell, we work to help them achieve their potential. Occupational Therapists are able to assess a child's level of performance and independence and offer treatment where there is a disruption. Treatment might include skill training, individualized accommodations, or task adaptation, depending on what is appropriate for that individual child. Children with PANS/ PANDAS (PP) can struggle with different aspects of independence and participation, depending upon whether they are in a flare or not.

Sensory Tools for PANS/PANDAS
We know that many children with PANS/PANDAS can experience sensory changes during flares, and some of these changes can even stay with the child once the flare has subsided. Differences in sensory processing can change the way that children experience the world. For example, the feeling of seams or tags in clothing may suddenly become extremely irritating to a child experiencing a PP flare. This may cause behavioural outbursts or refusal to wear clothes for some children. There are many other types of sensory challenges that children with PP may experience, including disturbances in the way they experience taste, smell, sound, visual, movement, and other touch sensations.

Occupational Therapists can work with these children and their parents or caregivers to determine what their individual sensory needs are at that particular time, and develop a special program of sensory activities that the child can use throughout the day to regulate their sensory systems. This special program is called a Sensory Diet, and can help children to stay calmer and more in control of their body throughout the day.

Environmental Modification for PANS/PANDAS
From a sensory point of view, Occupational Therapists can make recommendations on how to modify the home environment to ensure that it best suits the child's individual sensory needs. For example, this may include making recommendations about the lighting being used within the home if the child has visual sensitivities.

If a child is experiencing significant fatigue, pain or motor control challenges due to a PP flare, then an Occupational Therapist may make recommendations about different equipment or environmental modifications to help the child conserve their energy or to ensure their safety when moving around the home and performing daily activities.

Occupational Therapy and Stress Management for PANS/PANDAS
Occupational Therapists can help support well being and stress management in many different ways. They are able to work with the child and family to uncover potentially stressful triggers in their day. They can then develop a plan for minimizing those triggers or building strategies to help the child better cope with those stressors. Strategies might include specific sensory activities, mindfulness (e.g., awareness of breath), and modifying the task to minimize the stressful parts. Occupational Therapists can also support the child to understand how stress feels in their body and support the child to find effective calming strategies that can be used to prevent becoming overwhelmed by stress. This is called self-regulation training.
Top 5 Occupational Therapy Interventions/Accommodations for PANS/PANDAS

Sensory diet/ sensory calming strategies

Self-regulation training

Handwriting remediation for residual difficulties following a flare; and handwriting accommodations during a flare

Feeding therapy for residual food restriction following a flare

Strategies to support focused attention

OT Goals Change During Flares and Between Flares Absolutely! During flares, it's often really difficult for children with PP to relearn many of the skills that are impacted by the flare. This means that when a child is unwell, the Occupational Therapist will work to adapt or provide accommodations for activities that are more difficult (e.g., recommending the use of a scribe if writing is too hard, or using a calculator if maths becomes difficult). Once the flare begins to subside, the therapist is then able to support the child to relearn any skills they may have lost during the flare. This might include handwriting therapy, feeding therapy, self-regulation training, etc.

Fine Motor Skills & Handwriting Deterioration in PANS PANDAS

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Occupational Therapy for PANS/PANDAS - Aspire

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Michelle Newby, BHSc(OT), MSc discusses with ASPIRE how occupational therapy helps PANS/PANDAS patients. Michelle Newby BHSc(OT), MSc, is a PhD Candidate at the University of Newcastle, NSW, Australia. She is also an Occupational Therapist and the Director of Stepping Stones Therapy for Children in Newcastle, NSW, Australia Occupational Therapy for PANS/PANDAS Occupational therapists are [...]

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A picture book aimed at explaining the condition for younger children.

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PANS PANDAS is characterized by a cluster of symptoms occurring concurrently.

PANS PANDAS symptoms impact multiple areas of learning, specifically academic, cognitive, behavioral, and physical. PANS PANDAS is essentially a spectrum disorder; some PANS PANDAS students will be affected more severely than others and some will have a small concentration of symptoms while others will exhibit many symptoms across all domains.

"Our special education processes, often, rely on the assumption that students will make progress throughout the year. In contrast, students with PANDAS or PANS may demonstrate rapid shifts in their social, emotional or academic functioning as their systems react to, then recover from, illness. Teachers may, understandably, be baffled that the student who was passing math last week is now failing the class and acting out daily. Frequently, students with PANDAS or PANS experience such heightened anxiety that it is difficult to attend school at all, and their immune systems may not be able to tolerate exposure to peers during the height of cold and flu season."
Little Known Disorder Underscores Education Needs Patricia Rice Doran (Baltimore Sun-2014)
Academic/Cognitive Symptoms

Loss of math skills

Decline in handwriting skills (dysgraphia), Margin Drift

Inability to perform fine motor tasks

Reduced concentration

Perfectionism (Erasing through paper, Needing to start over)

Work refusal

Poor Short-Term Memory

Reduced memory: working memory and holding information

Avoidance of High Sensory Environments (Art, Music, Cafeteria, Physical Ed, etc...)

Decline in creativity

Difficulty with decision making

Reduced ability to focus

Poor organizational skills

Time management problems

Difficulty in planning & prioritizing

Visual and spatial processing difficulties

Processing delays

Selective Mutism

Loss of Focus on a Single Task

Physical/Sensory Motor Symptoms

Restricted food intake: fear of contamination, choking, sensory

Tics: Vocal and/or motor

Urinary frequency and involuntary urination

Unusual gait

Balance issues

Hair pulling and skin picking

Balance issues

Dilated pupils

Stomach pain

Fatigue and looking tired

Hallucinations

Selective mutism

Frequently sick

Low tone

Chapped Hands or Lips/Mouth

Social/Behavioral Symptoms

Obsessive-Compulsive Disorder

Obsessive Thinking (Inappropriate Thoughts/Rigid Thinking/Perfectionism)

Compulsions (Unable to stop disruptive behaviors)

Eating Issues (Limited Menu/Fear of Choking/Anorexia)

Anxiety (Separation Anxiety/School Refusal)

Aggression (Oppositional Defiance/Rages)

Age Regression/Immaturity (Tantrums/"Baby Talk")

ADHD (Fidgeting/Outbursts/Poor Impulse Control)

Sensory Issues

Age regression

Executive Functioning

Difficulty with Working Memory and Holding Information

Poor Organizational Skills

Time Management Issues

Difficulty Planning/Prioritizing Attention on a Single Task

Difficulty Making Decisions

Remember the Student's Perspective
One of the pitfalls of writing a list of accommodations for a student is that the student's perspective is often forgotten. Imagine being a student who enjoyed going to school as much as the next student, understood the curriculum, had friends, feels healthy, and had a full life outside of school too. Then imagine losing all of it in a blink of an eye. It is terrifying, disturbing and disorienting. Schools must support the student's emotional well being as well as academics. Make school a safe place for these children. Understand the student's limited capacity and that any participation and effort should be encouraged and applauded.

Learn more about PANS PANDAS Accommodations
PANS PANDAS Symptom Accommodations PANS PANDAS General Accommodations

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PANS Impacts Multiple Areas of Learning - Aspire

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PANS symptoms impact multiple areas of learning, specifically academic, cognitive, behavioral, and physical. PANS is essentially a spectrum disorder; some PANS students will be affected more severely than others and some will have a small concentration of symptoms while others will exhibit many symptoms across all domains.

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PANS PANDAS is a medical condition in which symptoms affect a student's ability to attend school and learn.

School Impact

PANS PANDAS not only impacts the physical health of a student but also causes psychological, neurological, behavioral, and developmental difficulties.

Symptomology and symptom severity vary from student to student and even from flare to flare in the same student. The goal of treatment is to achieve full recovery in order to prevent the student's condition from becoming a chronic, debilitating illness. Treatment includes medical protocols as well as therapeutic practices. School accommodations are an essential component of a thorough and appropriate treatment protocol. Please read the overview of PANS in the school setting below and then follow up with ASPIRE's Resources for Schools & Educators. Please register for a virtual in-services on PANS PANDAS.

Resources for Schools & Educators Virtual In-Service

PANS PANDAS Symptoms Seen at School at a Glance

OCD

Restricted Eating

School Related Anxiety

Separation Anxiety

School Refusal

Vocal and motor tics

Behavioral Regression

Urinary Frequency

Behavioral Changes: Increased oppositional defiance, rage, emotional lability, depression

Academic Regression: decline in handwriting, arithmetic, reading skills

Executive Planning Issues

Processing Delays

Sensory Issues

Impulsivity, Inattention, Limited Concentration

Decreased physical & mental

Resources for Schools & Educators

Individualized and Flexible Plans

Most PANS PANDAS students require individualized school accommodations to some degree, ranging from an Individualized Education Plan (IEP) to a 504 plan, to an Individualized Health Care Plan (ICHP) to non-formalized supports built into classroom friendly strategies.

The accommodations vary depending on the student's symptoms and severity as well as from flare to flare. Each symptom can cause its own set of difficulties at school and when combined with several symptoms, even more significant challenges must be addressed. There is neither a one size fits all presentation of symptoms nor a one size fits all set of accommodations.

Due to the changing nature of symptoms and the relapsing and remitting course of PANS, ensure plans are flexible. Plans should be written with the student's worst days in mind while hoping for the best days. A student may initially present with one or more primary symptoms, which may resolve with treatment only to be replaced with a new set of symptoms or different manifestations of the initial symptoms. Academic performance and attendance can vary widely during exacerbations.

One month, a student may be in a debilitating flare requiring several supports but later in the school year require significantly less only to relapse again. Not all PANS students return to baseline between flares, requiring year-round accommodations even while not in an active flare. Student performance and needs can vary day-to-day and week-to-week.

Other Health Impairment (OHI) is the condition that most PANS students qualify for an IEP. Students may be eligible for an IEP under different categories as well depending on that student's symptoms such as specific learning disability (SLD), autism spectrum disorder (ASD) or emotional and behavioral disorder (EBD). However, caution must be taken to not mislabel a student; SLD or EBD may not encompass all of the student's issues by focusing too much on a small portion of symptoms.

"Writing the plans with the most difficult days in mind will assure that the child can receive adequate accommodations without revisiting the 504 or IEP process often."

Clinical Management of Pediatric Acute-Onset-Neuropsychiatric Syndrome: Part I-Psychiatric and Behavioral Interventions, Margo Thienemann, MD et al

Key Take Away Points

Kids can get better

PANS/PANDAS is medical

PANS affects multiple domains of learning

Don't blame the child for his/her illness

PANS is essentially a spectrum disorder

All treatments and accommodations must be individualized

Symptoms are relapsing and remitting

The whole team must communicate and collaborate

Schools need to provide fluid access in and out of service

Plan for the worst and hope for the best

Resources for Schools & Educators

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PANS PANDAS at School PANS and PANDAS at School - Aspire

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PANS PANDAS is a medical condition in which symptoms affect a student's ability to attend school and learn. School Impact PANS PANDAS not only impacts the physical health of a student but also causes psychological, neurological, behavioral, and developmental difficulties. Symptomology and symptom severity vary from student to student and even from flare to flare in the same student.

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This tells the story of a sibling's experience with PANS/PANDAS

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This tells the story of a sibling's experience with PANS/PANDAS

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Owen's journey with PANS/PANDAS.  Reading age 4-8 years

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Owen's journey with PANS/PANDAS.  Reading age 4-8 years

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Children who have autism are at risk for the same medical conditions as children without autism. However, diagnosing PANS/PANDAS can be more challenging in children who have autism because of the overlap in clinical presentation.

A child who has autism who experiences an abrupt onset of OCD behaviors or eating restriction should be assessed for PANS PANDAS, particularly in the setting of an infection at the time of the change in behavior.

PANS/PANDAS patients are commonly misdiagnosed with Autism, Tourette's Syndrome, OCD, bipolar disorder, ADHD, Oppositional Defiance, or with an eating disorder. However, PANS/PANDAS patients can have co-occurring conditions of Autism, ADHD, autoimmune illnesses, immunodeficiencies, and more.

1 in 54 children are estimated to have been diagnosed with Autism.

1 in 200 children are estimated to have PANS/PANDAS.

One can have a dual diagnosis of PANS/PANDAS and Autism.

One can be misdiagnosed with Autism but actually have PANS/PANDAS.

In ASD, boys were more than 4 times as likely to be identified than girls.

In PANS/PANDAS, boys outnumber girls approximately 2 to 1.

No child should ever be denied proper evaluation for PANS/PANDAS just because they have Autism or another diagnosis.

If a child has sudden regressive Autism, they should be evaluated for PANS/PANDAS.

If a child has sudden worsening of symptoms associated with Autism, they should be evaluated for PANS/PANDAS.

If a child with Autism has new behaviors or symptoms that correspond to the PANS/PANDAS diagnostic criteria, they should be evaluated for PANS/PANDAS.

A child with Autism can have OCD without having PANS/PANDAS.

"PANS and PANDAS are sometimes misdiagnosed as OCD, Tourette's syndrome, autism spectrum disorder (ASD), ADHD, anorexia, and other psychiatric disorders. The presence of obsessive rituals and interests, rigidity around routines, and impaired eye contact may be confused with ASD in young children. Pediatricians should consider the possibility of PANS and PANDAS for any child who presents with sudden changes in behavior or mood." Casoli Reardon, MD, MCPAP Medical Director and Pediatric Liaison, MGH for Children at North Shore Medical Center.

"PANDAS may be more difficult to recognize in a child with autism - due to overlapping symptoms. Or it may be mistaken for classic OCD, which commonly co-occurs with autism. What distinguishes PANDAS from autism symptoms or classic OCD is the sudden onset of symptoms. As mentioned, this can include new anxieties and compulsive behaviors. Importantly, these symptoms are often accompanied by some tell-tale symptoms not usually seen with classic OCD. These include sleep difficulties, loss of bladder control, behavioral regression and loss of appetite. As we mentioned, many children with PANDAS also develop odd movements (e.g. tics), become irritable and moody or become noticeably more sensitive to loud noises or other stimuli." - Sue Swedo, MD.

On Prognosis: " If the child's autism was really a result of PANS or PANDAS, and again that is diagnosed by history, not by a blood test, then there is a very good chance of recovery. But if it is one of the overlapping circles and the child is unlucky enough to have both, then we can get the PANS and PANDAS better, but we may not be able to impact all of the autistic symptoms." -Nancy O'Hara, MD. (ARI-2017)

Return to Section:
Handouts & Brochures

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Autism and PANS PANDAS with Flyer - Aspire

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Children who have autism are at risk for the same medical conditions as children without autism. However, diagnosing PANS/PANDAS can be more challenging in children who have autism because of the overlap in clinical presentation.

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What Causes OCD?

While, we still do not know the exact cause or causes of OCD, research suggests that differences in the brain and genes of those affected may play a role.

Is OCD a Brain Disorder?

Research suggests that OCD involves problems in communication between the front part of the brain and deeper structures of the brain. These brain structures use a neurotransmitter (basically, a chemical messenger) called serotonin. Pictures of the brain at work also show that, in some people, the brain circuits involved in OCD become more normal with either medications that affect serotonin levels (serotonin reuptake inhibitors, or SRIs) or cognitive behavior therapy (CBT).

Is OCD Inherited?

Research shows that OCD does run in families, and that genes likely play a role in the development of the disorder. Genes appear to be only partly responsible for causing the disorder, though. No one really knows what other factors might be involved, perhaps an illness or even ordinary life stresses that may induce the activity of genes associated with the symptoms of OCD.

Some experts think that OCD that begins in childhood may be different from the OCD that begins in adults. For example, a recent review of twin studies has shown that genes play a larger role when OCD starts in childhood (45-65%) compared to when it starts in adulthood (27-47%).

What About PANDAS?

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) is a type of OCD that occurs in childhood following the body's reaction to infection. PANDAS looks very different from other forms of childhood OCD, the most obvious difference being that it happens very suddenly, with the child starting to have symptoms seemingly overnight, and has a very severe impact on the child's life.
For more information on PANDAS, including diagnosis and treatment, click here.
Future Research

Research is the key to finding the cause of OCD. The IOCDF provides funding support for researchers in the OCD and related disorders field through the IOCDF Research Grant Program. The IOCDF also hosts the Annual IOCDF Research Symposium, an event that takes place each year the day before the Annual OCD Conference.
Read more about our research efforts Support the research programs
Learn More About OCD

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International OCD Foundation | What Causes OCD?

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While, we still do not know the exact cause or causes of OCD, research suggests that differences in the brain and genes of those affected may play a role. Research suggests that OCD involves problems in communication between the front part of the brain and deeper structures of the brain.

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This book explores the experience of a young boy with PANDAS.

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US Resource for preparing for a new school year

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What You Need to Prepare for a New School Year

PANS PANDAS impacts the physical health of a student and causes psychological, neurological, behavioral, and developmental difficulties.

At the start of a school year, parents of students with PANS PANDAS should schedule a time to meet with their child's new team, including teachers, therapists, guidance counselors, etc. If the student has a 504 Plan or an Individualized Education Plan (IEP), the Case Manager/ Coordinator and other relevant school personnel will attend the meeting. In addition, if it is appropriate, the student may participate in the meeting.
Be prepared to share the following information:

Letter from your child's healthcare provider, which lists the medical condition, treatment/medication, and recommendations for accommodations/modifications. Do not forget to include provisions for absenteeism if necessary.

Parent/Student letter - Include how the student's PANS PANDAS affects their day. Include after-school activities as the school day can impact what happens outside of school.

Bring copies of the following ASPIRE publications:

Invite school staff to contact ASPIRE for a Virtual School In-Service Lecture program. Bring the flyer

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Preparing for a New School Year with PANS PANDAS - Aspire

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A the start of a school year parents of students with PANS PANDAS should schedule a time to meet with their child's new team including teachers, therapists, guidance counselors, etc. If the student has a 504 Plan or an Individualized Education Plan (IEP), the Case Manager/ Coordinator and other relevant school personnel will attend the meeting.

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US Resource, school support for children with PANS/PANDAS

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US Resource exploring considerations for schools including the areas of assessment that might be required.

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(Guest Post written by Tina Coope on behalf of PANS PANDAS UK) Have you heard of PANS or PANDAS? Don’t worry if you have never heard of these medical conditions and you are either a parent and/or e…

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PANS : Pediatric acute-onset Neuropsychiatric syndrome

PANDAS: pediatric autoimmune neuropsychiatric disorder associated with strep

PANS is a broad term that includes all the neuropsychiatric disorders that are associated with numerous infections such as Mycoplasma, Lyme's, Influenza, and Streptococcus bacteria, while PANDAS is associated strictly with Strep.

PANS/PANDAS is a clinical diagnosis based on subjective criteria. However, to help doctors with quick and effective diagnosis, criteria have been developed (1). PANS/PANDAS is defined as the sudden onset of OCD, along with other symptoms such as:

(1) Illinois PANDAS/PANS Advisory Council Report

pans/ pandas diagnosis at schools can play a crucial role

Since PANS/PANDAS is a clinical diagnosis, schools can play a very important role in the diagnosis of new patients and in providing crucial support needed by existing patients. The onset of PANS/PANDAS is associated with a dramatic, "overnight" change in behavior, such as a sudden decline in school performance, and the appearance of anxiety in a non-anxious child or adolescent.

School staff and nurses should careful watch out for PANS/PANDAS symptoms after infections. Infectious trigger can vary from Strep to Lyme's, Influenza, and others.

Sudden changes may include:

As PANS/PANDAS is still a relatively unknown illness, school nurses and staff often recognize the illness's symptoms without recognizing the illness itself.

Urinary Frequency: Increased urinary frequency in children in the absence of a urinary infection may be a symptom for PANS/PANDAS.

Source: "Strep and Urinary Frequency: Is There a Connection?", Kim,C.,Docimo,S.G.,McKay,K., New England Section of The American Urological Association, Sept. 28-30, 2006.

Disordered Eating: Sudden dietary restrictions such as the refusal to consume certain types of foods may be a symptom for PANS/PANDAS/

Source: "Disordered Eating and Food Restrictions in Children with PANDAS/PANS",Toufexis,M.D.,Hommer,R.,Gerardi,D.G.et al.,Journal of Child and Adolescent PsychopharmacologyVol. 25, No. 1,2015

Separation Anxiety: Extreme separation anxiety in children can also be as a symptom for PANS/PANDAS. The child will not leave the parents or caregiver, and will want them to be present with them all the time

Source : "The curious case of the "inseparable child",Navkhare,P.,Kalra1,G., Indian J Psychiatry. 2014 Jul-Sep; 56(3): 292-294

" BEFORE PANS - John had always been excellent in math"
" AFTER PANS - ...he suddenly missed relatively easy questions on math tests"

- PANDAS and PANS in the School Setting

PANS/ PANDAS patients show sharp deterioration in math and geometry skills

Another classic symptom in several PANS/PANDAS patients is the sudden deterioration in math skills and subjects such as geometry and visual-spatial skills.

Educators and staff should keep careful watch of this symptom.

PANS/ PANDAS kids sometimes show eating restrictions and anorexia

PANS/ PANDAS patients can sometimes show severe eating restrictions. An adolescent who enjoys typical Indian food and rarely had seafood may suddenly stop eating Indian food and begin solely consuming seafood. In some severe cases, patients have been reported to stop eating food and have had to use a GI tube. However, once treated, patients are noted to return to their pre-illness eating habits.

Case History

An eight year old boy who presented with a two month history of significant weight loss, behavioral abnormalities, and a history of recurrent Strep Infections. The patient had been taught 'healthy eating' at school. He subsequently started reading labels on food packages, avoided all trans-fats, and minimized his fat and simple carbohydrate intake. He was concerned about weight gain and believed that he was 'too fat'. He then began looking at his abdomen and at himself in the mirror numerous times daily. He became suspicious of what his mother might be putting in his food and began only eating packaged foods that he could prepare himself, which amounted to about 200 calories daily.

Source : "Certain Eating Disorders May Be a Neuropsychiatric Manifestation of PANDAS: Case Report", Calkin, C.V., Carandang, C.V., J Can. Acad. Child Adolesc. Psychiatry, 2007 Aug; 16(3): 132-135.

PANS/pandas patients may often demonstrate behavioral regression during flareups and treatment

PANS/PANDAS patients often times show behavioral regression, such as "baby-talk" and child-like behavior.

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Schools: Things to watch - Schools for PANDAS

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PANS is a broad term that includes all the neuropsychiatric disorders that are associated with numerous infections such as Mycoplasma, Lyme's, Influenza, and Streptococcus bacteria, while PANDAS is associated strictly with Strep. PANS/PANDAS is a clinical diagnosis based on subjective criteria. However, to help doctors with quick and effective diagnosis, criteria have been developed (1).

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PANS PANDAS Symptoms

A unique set of symptoms characterizes PANS and PANDAS. The PANS diagnostic criteria are based on the acute onset of OCD and/or eating restrictions, with concurrent symptoms in at least 2 of 7 categories of neurological, cognitive, or behavioral symptoms. PANS PANDAS symptom presentation, the severity of symptoms, and the trigger can vary from patient to patient. PANS symptoms are triggered by infections, inflammatory reactions, or metabolic disturbances.
See full PANS Diagnostic Criteria

Obsessions

Perfectionism

Fear of Contamination

Fear of Losing Control

Fear of Harm

Scrupulosity

Unwanted Sexual Thoughts

Compulsions

Checking

Repeating

Washing/Cleaning

Mental Compulsions

Confessing/Reassurance Seeking

Trying to achieve "Just Right"

Avoidance (tasks, places, people)

Severe Eating Restriction (More info & packet)

Includes Food and Liquids

Avoidant of particular foods and/or limited intake

Fear of: Contamination/Poisoning, Choking, Swallowing, Vomiting, Anaphylaxis

Sensory Issues: Hypersensitivity - textures, smells, tastes

Ritualistic Eating

Body Dysmorphia in a small subset

Swallowing issues

Loss of appetite

Anxiety

Depression
Emotional Lability/Mood Swings

Aggression

Severe Oppositional Defiance - ODD

Rage

Behavioral Regression

Baby Talk

Tantrums

Developmental Regression

Sensory and Motoric Abnormalities (See more on Sensory Processing, Tics, etc.)

Sensory Processing Issues

Motor and/or Vocal Tics

Choreiform Movements

Hallucinations

Hyperactivity

Dysgraphia

Akathisia

Hallucinations

Decline in Academic Skills (See PANS @School)

Somatic Symptoms (See Sleep Problems)

Daytime Urinary Frequency

Nighttime Bedwetting - Enuresis

Problems Falling or Staying Asleep

Night Terrors

Lack of REM Sleep & other Physiological Reasons

Repeated Flares & Baseline

Do patients go back to baseline between flares/exacerbations?

Not always. Some symptoms can remit fully while others are reduced but not back to baseline.

PANS symptoms can relapse and remit. In between flares, symptoms do not always go back to baseline. Unfortunately, in some cases, subsequent flares can be more severe with a longer duration; symptoms move further away from baseline and can become chronically debilitating.

PANS symptoms can remit completely, especially if treated quickly and thoroughly. Treatment plans should not only include treatments to clear the current flare but also address symptoms that have not returned to baseline. Ultimately the goal is to relieve symptoms and prevent symptoms from becoming chronically debilitating. See Treatments.

PANS Symptom Severity

The severity of PANS symptoms varies from patient to patient and can vary from flare to flare.

Treatment plans reflect the severity of the current PANS flare and case history. Not all patients return to baseline between flares, which can affect treatment plans. PANS is a clinical condition identified by an abrupt onset of a specific cluster of symptoms as a result of a variety of etiologies and disease mechanisms. Therefore, tracking symptoms and their onset, severity, and duration is critical to making a clinical diagnosis. Both clinicians and parents can use PANS symptomology rating scale tools to monitor symptom severity. More information on PANS Rating Scales and Symptom Tracking.

Mild Symptomology

Mildly severe PANS PANDAS symptoms interfere with daily life but are manageable and do not completely debilitate the patient.

Mild PANS PANDAS symptoms may present in some situations but not in all. For example, a patient may be able to attend school with some reservations but once back home is definitely anxious about being separated from a parent, needing significantly more attention than before the flare. Obsessive-compulsive symptoms occupy 1 to 2 hours of the patient's day without escalating to obsessional fears.

Symptoms interfere with daily life but not in all settings.

The patient is able to attend school but with separation anxiety.

OCD occupies 1-2 hours a day without escalating to obsessional fears.

Other symptoms vary from patient to patient and from flare to flare but are not incapacitating.

Symptoms require some school accommodations.

Moderate Symptomology

Moderately severe PANS symptoms interfere with daily life; some symptoms are less manageable, significantly negatively hindering a majority of activities.

Obsessive-compulsive symptoms are present 50% to 70% of a patient's waking hours but do not interfere with all activities. For example, a patient may not be able to attend school but may be able to go to a friend's house if a parent is with them. Other symptoms are also moderately severe; they impact the patient most of the day but are not completely incapacitating at all times.

OCD occupies 50%-70% of the waking day. Impacts daily activities severely but not fully disabling.

Other symptoms are also moderate; impact daily life but not incapacitating.

School attendance may be affected, but the patient may be able to engage in other activities.

Symptoms require increased school accommodations and supports.

Severe Symptomology

PANS symptoms are severe when neuropsychiatric symptoms cause life-threatening situations.

Serious weight loss (>10%-15% of body mass) can be a result of obsessional eating restrictions associated with fear of vomiting or choking, fear of contamination, and other reasons. Severe impulsivity or severe behavioral regression can manifest in life-threatening ways such as jumping from heights or moving cars or threatening harm to self or others with knives or other dangerous objects. Aggressive treatment is typically necessary. Obsessive-compulsive thoughts are dominant, occupying 80%-100% of waking hours, obstructing most daily functioning like attending school, showering, performing simple tasks. Separation anxiety is equally extreme; patients often can barely leave the house, will not separate from parents at all and sleep in the parent's bed. Other symptoms may be equally impacted, including increased aggression, emotional lability, and irritability.

Neuropsychiatric symptoms can result in life-threatening situations.

Hazardous Impulsivity and/or Regression

Weight Loss (>10%-15% of body mass) due to obsessional food restrictions & fear

OCD, anxiety, and fears occupy 80%-100% of waking day.

Unable to attend school due to OCD and Separation Anxiety.

Irritability, Liability to self and others, Aggression, and other symptoms can be equally present.

We aspire to inform.

Learn about other families whose lives have been affected by PANS/PANDAS - and be inspired to share your own.
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Leah's Story

In August of 2014 our daughter, Leah, was 6 years old. We had just returned home from a month-long trip to Illinois to visit family. When we arrived home in Arizona, she suddenly (overnight) developed a fear of vomit.

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PANS PANDAS Symptoms: A unique set of symptoms - Aspire

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A unique set of symptoms characterizes PANS and PANDAS. The PANS diagnostic criteria are based on the acute onset of OCD and/or eating restrictions, with concurrent symptoms in at least 2 of 7 categories of neurological, cognitive, or behavioral symptoms. PANS PANDAS symptom presentation, the severity of symptoms, and the trigger can vary from patient to patient.

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Therapeutic Strategies for PANS PANDAS Parents with Julie Cox, LCSW

ASPIRE sits down with Julie Cox, LCSW, to discuss why therapeutic strategies can be beneficial to PANS PANDAS parents and caregivers, how not to pathologize everything, and ways to accept that the healing journey is often slower than we would like it to be.

Gabriella: I am delighted to sit down with Julie Cox, a PANS & Lyme mom, and a social worker. I have gotten to know Julie over the past few years as parents have recommended her, and through her Facebook group, she hosts for fellow PANS/PANDAS parents.

Julie, can you tell our ASPIRE community a little bit about your PANS/PANDAS journey?

Julie: Hi Gabriella, thanks so much for having me! I am very grateful for all that you are doing with ASPIRE for PANDAS/PANS families. Our family has a long history with PANDAS/PANS. Like many fellow PANDAS/PANS parents, it has been a long journey of seeking answers. I am grateful that after about a 15 and 1/2 year journey, we are pretty much into recovery. We have been lucky in many ways.

Gabriella: How do you think being a therapist helps you weather the storm of parenting and supporting a child with PANS?

Julie: It was fortunate that I was working with young children as a social worker/therapist when we realized we were having issues with our own child. In my work, I was being exposed to kids with various developmental diagnoses, so I was able to have my own child assessed very early. I had been a social worker for about three years at that point (in 2004), but prior to that, I had worked in medical research for eight years, so I was a researcher at heart. It was in my makeup to keep digging for more information and not be satisfied with answers that didn't seem to fit for our family. I kept asking myself and the practitioners questions such as "Why did my child only show delays intermittently? Why was there this vacillation of symptoms?" It didn't make sense. I just kept reading and researching for answers, mostly out of desperation. I called anyone who I thought could help! I had heard about DAN (Defeat Autism Now) because although we didn't have an autism diagnosis, my child was looking very PDD (Pervasive Developmental Disorder) to me, and I knew that early intervention was key. I believe I read an article by Sidney Baker, MD, about how the spectrum diagnoses were much more complex than just behavioral diagnoses. I was intrigued, because I saw that my child was not gaining weight properly, never fed properly, always looked uncomfortable, had rashes, etc. I believe Dr. Baker also wrote about glutathione in his article. Ironically, when I worked at a National Cancer Institute research facility, I was working on glutathione and its impact on a cellular level. I felt that Dr. Baker was speaking the truth in a world of medicine that didn't know how to treat the serious health issues that were going on for these kids. I called his house! Don't even ask me how I got his number, who knows; I was a mom on a mission. I remember his wife answered and told me he didn't take on new patients anymore. I cried and begged, and I think she got so aggravated with me that she got him to agree to see us. We drove 4 hours to see him. I believe my child was ten months old at that time and screamed the whole way (car rides were awful). Dr. Baker explained so much to me. He educated me about the gut-brain connection and how many factors had impacted my child. He advised me to start feeding my child organic chicken broth with pureed chicken in a bottle and helped us begin to deal with yeast overgrowth. We followed his advice right away, and after a short time, my child began to eat somewhat normally for the first time. What a relief! Some lost milestones were returning! How fascinating! I had always believed in the field of psychoneuroimmunology (aka the gut-brain immune system relationship), and now I could see the connection with my own eyes. Seeing such incredible results gave me momentum to seek more answers.

Since Dr. Baker was a long drive away from us, he referred me to someone he was mentoring, named Dr. Nancy O'Hara. We have worked with Dr. O'Hara since, in addition to many other doctors and practitioners, to cover the many areas that PANDAS/PANS encompasses. As far as being a therapist, since I completed a specialty in the treatment of children in graduate school, I had a lot of tools to work with kids. I applied my knowledge and tools at home in many forms-play therapy, behavioral interventions, social skills training, executive functioning assessment and intervention, CBT/exposure work for the fears and anxiety, etc. I was lucky that this was my field, and I could apply these tools to some degree on my own. We also sought out therapists to help our child gain skills and deal with anxiety, OCD social skills, low self-esteem, and defiance.

Why therapeutic strategies can be beneficial to PANS PANDAS parents and caregivers

Gabriella: When we talk about the three-pronged approach to PANS/PANDAS treatment, we are always focused on the patient. But we know it actually affects the entire family. Can you give us a brief overview of why parents and caregivers should learn how to employ therapeutic strategies and why they are beneficial?

Julie: Yes. I found that as a PANDAS/PANS parent and for the families I work with, that helping the parent(s) get emotionally regulated is incredibly important. I was often in fight or flight, and I was not effective in using strategies for my child and family until I was able to calm myself first. I like to use evidence-based therapy interventions with families such as DBT (Dialectical Behavior Therapy) skills, which include mindfulness and distress tolerance tools. The nice thing about DBT is that the skills are typically acronyms, so they are pretty easy to remember when we are under stress.

I also use ACT (Acceptance and Commitment Therapy) skills with families and parents. One of the principles of ACT is: "pain is inevitable, but suffering is optional." ACT helps you accept your current reality, as painful as it is so that you are not constantly spending energy to fight the current circumstances and extend your pain and create more anxiety. ACT also emphasizes taking actions that are in line with your values to prevent feelings of guilt or anxiety. ACT also offers "defusion" techniques that I teach families to help them create dual awareness of their current circumstances yet maintain hope for the future.

The mindfulness components of DBT and ACT lend themselves to a higher level of self-observation so that we can recognize and slow down our reactions to the current PANDAS/PANS situation at home. However, it takes time to learn how to slow that reaction in ourselves as parents so we have to practice compassion with ourselves and observe ourselves non-judgmentally.

Healing from PANS/PANDAS - Starting low and going slow

Gabriella: As parents, we want to heal our kids as fast as possible and get back to normal or at least out of the torment of PANS/PANDAS. When healing doesn't happen quickly, flares go on for longer than a month, or we are experiencing flares back to back, our stress compounds, and our ability to be resilient wanes. Plus, our kids feel the weight of the illness even more as time goes on. We have heard many times that healing is a marathon and not a sprint, but how do we work on reframing our mindset to not just hear that phrase but to incorporate it into our lives and our kids' healing?

Julie: It is important to accept that recovery can be a slow process, and we often have to slow down the pace. I am guilty as well of the fast and furious approach with my child! And then I would beat myself up when I did it! Two approaches that were not helpful, but we must understand that there is an innate drive to protect and heal our child, and it's a very important drive. We can't ignore it; we just have to pace it. It's similar to learning how to press the gas and brake pedal in a car-we don't floor it to go forward, and we don't slam on the brakes to stop. Slow and easy does the trick.

I had to begin to recognize micro-changes in my child and help families recognize this as well. There is a lot of grief that comes up when we try to do this because the loss of what we wish our child could do or was able to do previously comes right up when we have to slow down and accept their pace. Allowing that grief process is very important. Many are familiar with the grief stages that include sadness, anger, bargaining (if only I had...or if only they had...) depression and finally, acceptance. The majority of the time, these emotions do not come separately or in order. That can make the process challenging to recognize and process. Working through the stages of acceptance will help us be mindful of slowing down and not moving into reaction.

Acknowledging the feelings of loss and expressing them (with another PANS parent, a safe friend, or even a therapist) will take some of the pressure off of wanting to achieve change faster than is possible. Using stress management techniques (mindfulness skills, breathing skills) as well as physical activity to discharge pent up feelings can also help with this. I also like to teach parents how to identify what " zones of regulation " they are in and ways they can get themselves back into the "green zone of regulation".

If we do try to force changes, we can forgive ourselves and remind ourselves that "slow and steady wins the race" Sometimes we end up having to undo changes that we have attempted if we push too hard too fast, but we have to forgive ourselves and learn from it the best we can.

PTSD and how to not pathologize everything our kids do

Gabriella: The typical course of PANS/PANDAS is one that relapses and remits, often with a sawtooth recovery, even though some patients have only one flare while others fall into a chronic-static state.

Let's talk about what happens between those flares. Sometimes someone will flare several times a year while others don't have another flare for years. Since we never know how long it will be until the next flare, what will trigger it, how long will it last, or even if we will be able to fix it, parents and patients are often left in a state of constant worry, constant dread. We become hyper-aware of every cough, every sore throat, every meltdown, every sign of a compulsion; we are always on the lookout for the next flare or signs that the current flare is indeed getting worse.

How do we not pathologize every single thing that happens to our kids? Why is it so easy to automatically do so? What are the tools we need to learn to help minimize this?

Julie: Since our families have been through repeated losses and traumas related to PANDAS/PANS, our nervous system is on high alert for signs and symptoms related to P/P. It's important to be gentle with ourselves as we learn new ways of responding. When our nervous system is in fight or flight, we don't always have an accurate perception of what is occurring. We are "primed" to see signs that our PANS child seems "off" and sometimes it's very important to attune to this and acknowledge it, but the key is to find the "middle path" of recognizing and considering that we may be seeing PANS symptoms but to wait before we react. This ability to self-observe and not react goes along with the skill of learning to "coregulate" with our P/P/L child, which means attending to the situation at hand and mindfully adjusting ourselves to understand our PANS child without overreacting. When we as PANS parents get better at this, our PANS kids also get better at being able to "control" their nervous system. This means fewer meltdowns, better cooperation, and better mood states. So as I said, the mindfulness components of DBT and ACT lend themselves to a higher level of self-observation so that we can recognize and slow down our reactions to the current PANDAS/PANS situation at home.

Julie Cox, LCSW

As an undergraduate, Julie attended Binghamton University and majored in psychology. After college, she worked for 8 years in medical research at UCLA Medical Center, Columbia University Medical Center and a National Cancer Institute, where she was an Assistant Research Scientist and co-authored several research publications. When Julie realized that her passion was to work face-to-face with people instead of in the lab, she pursued her Master's in Social Work at Fordham University. At Fordham. She completed a specialization in the research department at Fordham called Children FIRST: https://www.fordham.edu/info/23860/children_first. Over the last 20 years as a therapist, Julie has continued to train and refine her approaches to helping families reach their goals by completing several certifications in CBT (Cognitive Behavioral Therapy), DBT (Dialectical Behavioral Therapy), ACT (Acceptance and Commitment Based Therapy), EMDR (Eye Movement Desensitization and Reprocessing) and Attachment Based Interpersonal Neurobiology. All of these treatment approaches are evidence-based.

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ASPIRE sits down with Julie Cox, LCSW, to discuss why therapeutic strategies can be beneficial to PANS PANDAS parents and caregivers, how not to pathologize everything, and ways to accept that the healing journey is often slower than we would like it to be.

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PANS PANDAS & Food Restriction/Avoidance

If your child has new or suddenly increased food avoidance or eating restriction along with other behavior, neurological or cognitive changes, it might be due to PANS/PANDAS. Food restrictions and OCD are the two top-tier symptoms of PANS. For more information on PANS PANDAS Symptoms

Click the button below to download the twelve-page toolkit that provides information on Restricted Eating in PANS PANDAS.

Register with ASPIRE to download this information toolkit.
PANS & Restricted Eating Toolkit
ASPIRE has two additional PANS & Restricted Eating Handouts. One is a general information handout that can also be downloaded as a poster. The second handout is Restrictive Eating in School. Please see the end of this article to download those.

Main Article Sections

PANS & Restricted Eating

Restricted Eating and OCD are the two major symptoms in the diagnostic criteria for PANS. Roughly 50% of PANS patients will have some degree of restrictive eating, and about 17% will have life-threatening issues as a result. Restrictive eating can include both food and fluids. Restrictive eating includes avoidance of particular foods and fluids and restricting the intake amount.

People with PANS restrict eating due to disordered sensory hypersensitivity, obsessional fears, difficulty swallowing, decreased appetite, or body image issues. For many, food restrictions are firmly rooted in OCD, a primary PANS symptom; there are often fears of contamination/poisoning, vomiting, choking, or anaphylaxis. Another symptom of PANS PANDAS is sensory processing issues; hypersensitivity can lead to problems tolerating particular textures, tastes, and smells. Some patients have swallowing issues. Doctors can order a swallowing study if there are obsessional symptoms surrounding vomiting or choking to rule out a physical issue that may be prompting fears. PANS PANDAS patients can have distorted body images, especially in patients who have had PANS PANDAS for several years, so this is seen more often in older patients, but it can happen in younger patients.

PANS patients with restrictive eating may experience significant health issues even if they have not been diagnosed with an eating disorder like Avoidant Restrictive Food Intake Disorder (ARFID) or Anorexia Nervosa (AN). Note that PANS patients with GI issues or stomach pain should discuss causation and treatment with a doctor. Both Lyme and Strep can lead to GI pain, so take care to consider causes.

Increased awareness of eating disorders resulting from PANS is needed to provide proper diagnosis and treatment promptly. Treating PANS/PANDAS is a three-pronged approach: 1) remove the source of inflammation, 2) treat the dysregulated immune system and inflammation 3) treat the symptoms. If PANS patients with eating disorders are not diagnosed correctly, then they are not receiving all three prongs of the PANS PANDAS treatment guidelines; only implementing psycho-therapeutic interventions will not be enough for lasting recovery.

About Restrictive Eating in PANS

Can include food and fluids

Reasons

Sensory processing issues: hypersensitivity to textures, tastes, smells, sounds

Fears: contamination, poisoning, choking, vomiting, anaphylaxis

Ritualistic eating behaviors

Difficulty swallowing

Decreased appetite

Body image issues

Can have a comorbid diagnosis

Avoidant Restrictive Food Intake Disorder (ARFID) is the diagnosis most seen

Anorexia Nervosa also possible, though usually PANS patients are not worried about body shape or size, but it is thought this rate increases the longer symptoms persist

Unlikely to meet the criteria for Binge Eating Disorder (BED) but excessive eating does occur

Importance of Identifying When Restrictive Eating is a Result of PANS

The therapies for PANS cases are different from those with non-PANS-related ARFID or AN since antibiotics and/or immunomodulatory treatments can be curative. Treatment should consist of the full PANS PANDAS three-pronged treatment approach; treating only psychotherapeutically would more than likely not be sufficient.
Eating disorder specialist or other targeted therapeutic interventions may be needed in cases of severe symptoms or residual restricted eating

Restrictive eating can cause malnutrition, nutritional deficiency

Restrictive eating can cause medical complications

Restrictive eating can cause significant weight loss or failure to gain weight

Restrictive eating can cause psychosocial functioning issues & developmental delays

Restrictive Eating can cause gastrointestinal complications

Restricted Eating Can Lead To

Nutritionally deficiency

Significant weight loss or failure to gain weight

Psychosocial functioning & developmental delays

Gastrointestinal complications

Risk of Medical Issues Due to Restricted Eating Increase With

Rapid weight loss

Significant weight loss in proportion to body size

Extended periods of restricted eating

Extreme restriction of fluids or food

Treatment of Restricted Eating Due to PANS PANDAS

Treatment Overview

The duration and severity of restricted eating due to PANS can vary from patient to patient and from flare to flare. PANS PANDAS treatment is dependant on a three-pronged approach: 1-remove the source of inflammation with antimicrobials (if triggered by an infection), 2-treat the dysregulated immune system with immune modulators and/or anti-inflammatories depending on severity, 3-treat symptoms psychotherapeutically as needed. Antibiotics, IVIG, and/or steroids may improve symptoms of bacterial infection-triggered anorexia nervosa quickly. However, patients with continuing eating abnormalities will need medical interventions and psychotherapeutic treatments to focus on factors contributing to the eating restrictions. Patients with insufficient nutrition leading to poor growth or weight loss must be treated aggressively to minimize increased psychological and medical complications. See ASPIRE Treating PANS PANDAS and toolkits for more information on PANS PANDAS treatment.

Treat PANS PANDAS as per three-pronged PANS treatment recommendations

Treat the source of inflammation

Treat the dysregulated immune system

Focus on maintaining adequate nutrition and hydration while treating underlying brain inflammation

Medical work up to assess for other medical disorders

During the acute phases feeding tubes may be necessary

Feeding Therapy to target factors contributingto ongoing restricted intake

Exposure and Response Prevention (ERP) for compulsive behaviors and anxiety

Gradual exposure to situations and food which cause fear in a safe environment

Incrementalprogress towards increasing intake and expanding diet

Cognitive Behavioral Therapy (CBT) to address obsessive, intrusive thoughts

Occupational Therapy (OT) to address breathing, relaxation, posture may help fear

Family Therapy to educate and empower families to firmly support goals, to lift blame from the parents and helps build compassion

Medical Work Up for Other Medical Disorders

A thorough medical evaluation should be performed to rule out additional medical disorders due to restricted intake of food and/or fluids.

Rule out other medical disorders (e.g., eosinophilic esophagitis, structural or neurological causes of dysphagia, and nausea), include a swallowing study if there are fears of choking or vomiting

Assess for medical instability

For severely limited intake, assess orthostatic vital signs, EKG, and electrolytes, including phosphorus and magnesium, and monitor for refeeding syndrome

Hospitalization may be required if medically unstable

Restrictive Eating Cycle

In OCD, there is a loop of obsessive thoughts leading to anxiety that prompts a compulsion, which only provides temporary relief before the intrusive obsessive thoughts dominate again. This vicious cycle is similar to what we may see with restrictive eating restrictions due to PANS. Restrictive eating seen in PANS due to fears, ritualistic behaviors, swallowing issues, or sensory issues may create a vicious cycle. Someone with PANS has their initial reason for avoiding foods or restricting intake, which causes anxiety, then there is temporary relief from not eating, but this reinforces the reasons behind these choices.

Exposure and Response Prevention & Cognitive-Behavioral Therapy

Exposure and Response Prevention (ERP) and Cognitive Behavioral Therapy (CBT) are used in treating ARFID and can be applied to treating patients with PANS PANDAS who have restricted food or fluid intake. ERP may be helpful for compulsive behaviors and anxiety. ERP involves gradual exposure to situations and food which cause fear and anxiety but in a safe and controlled environment. The patient makes incrementalprogress towards increasing intake and expanding diet. CBT may be helpful to address obsessive, intrusive thoughts. ERP helps remove the fear connected to particular foods. The approach involves rewards for taking small bites of anxiety-inducing food. It also includes talking about and journaling about foods, learning coping skills, and mental visualization. CBT uses talk therapy to help recognize and correct self-destructive patterns of thought and behavior. It can also address other OCD behaviors, anxiety, and depression.
The Goal of CBT/ERP in Feeding Therapy

Achieve/maintain a healthy weight

Correct nutritional deficiencies and micronutrient state

Eat foods from the five basic food groups. Eat a larger range of foods

Be more comfortable eating in social situations, eating in front of others

Become less fearful of contamination, choking, or vomiting

Increase interest in food and eating

The Goal of Treatment is Not

An attempt to change patient's personality

To eat very unusual foods

To force-feed patients

CBT/ERP Feeding Therapy Outline

Learn about the disorder and begin to make changes

Work on determining why food restrictions happen: track situations, triggers, food choices, etc

Increase intake of preferred foods

Begin to increase the variety of foods

Continue to make changes & set goals

Increase amount of food

Increase food variety

Establish goals to face fears

Begin to face fears, intrusive thoughts
Begin exposure by starting small and gradually increasing exposure to new foods and exposure to feared foods

Prevent Relapse
At the completion of the program, create plans to continue practicing at home to prevent relapse

Family Therapy

Family therapy as used in anorexia nervosa may also be applicable in restricted food intake seen in PANS PANDAS or ARFID. Family therapy focuses on increasing education on the risks of restrictive eating while empowering parents to focus on and be firm about weight gain and nutrition goals. Family therapy also serves to lift blame from the parents and helps build compassion and understanding of the patient's experience. Families may learn to maintain detailed food diaries and use weight graphs.

Treatment Sources

M Thienemann, T Murphy, J Leckman, R Shaw, K Williams, C Kapphahn, J Frankovich, D Geller, G Bernstein, K Chang, J Elia, S Swedo. JCAP. Sep 2017.566-573. DOI:10.1089/cap.2016.0145

Thomas, J.J. and Eddy, K.T. (2019). Cognitive-Behavioral Therapy for Avoidant/Restrictive Food IntakeDisorder: Children, Adolescents, & Adults. Cambridge: Cambridge University Press.

Wendy Spettigue, MD, Mark L Norris, MD (2019). Understanding and Treating Avoidant Restrictive Food Intake Disorder in Children and Adolescents. Psychiatric Times

PANS & Eating Restrictions at School

Adding Accommodations for Restrictive Eating to an IEP

One can include accommodations and goals for restrictive eating in an IEP. Feeding therapy is a related service for an IEP as per case law and guidance from OSEP. Feeding therapy support at school is essential if the family does not have a private feeding or cognitive-behavioral therapist. If one has a private therapist, communication between the doctor, therapists, the school, and family is critical. Some families and private feeding therapists may feel that providing supports instead of creating goals at school and then working on goals outside of school may be more effective. The key is to be consistent in approach. Eating disorders and the therapy can be stressful enough; the addition of other PANS symptoms can be overwhelming. It may be more appropriate to focus on socialization and fun and provide a break during lunch rather than implementing feeding therapy during lunch. Also, it may be more effective to master strategies at home before generalizing to the school environment.
Eating Restrictions at School PDF
Strategies for School

Communicate with family, providers, and therapists about specific therapeutic strategies

Be flexible about the time it takes to eat - May need longer breaks

Do not draw attention when a student eats the same foods repeatedly

Allow frequent snacks to ensure adequate calories

Be flexible on healthy food school policies if a student is self-restricted to foods not on the list

Do not pressure to eat more or take a bite

Provide anytime pass or alternate activity if a student's restrictive eating prevents them from participating in food-related activities

Provide anytime pass to access the bathroom

Relevant Studies

PANS PANDAS Children with Food Restrictions and Disordered Eating (Toufexis Study)

Disordered Eating and Food Restrictions in Children with PANDAS/PANS. Toufexis, DO, et al. JCAP Vol 25, 2015. DOI:10.1089/cap.2014.0063

The rate of eating disorders in children is increasing, especially in males. "Between 1999 and 2006, there was an 119% increase in eating disorder-related hospitalizations for children < 12 years of age." This increase may be linked to PANS. The authors of the study hope that a PANS diagnosis will be considered in cases with an acute-onset food restriction or avoidance. The therapies and outcomes for PANS cases are different than those with ARFID or AN since antibiotics and/or immunomodulatory treatments can be curative.

The study included 29 children with PANS who had new abrupt onset of eating restriction or food avoidance, ages 5-12 years old.

66% fear of contamination (41%-Germs, 10%-Poisoning, 14%-allergens, bleach, illicit drugs, "the essence & personality of other people"

28% fear of vomiting

21% fear of choking

10% body image issues

"In youth with PANDAS, food restriction has been reported to occur in the context of obsessional fears about contamination, as well as in the context of the sudden onset of fears of swallowing, choking, or vomiting that are often associated with sensory phenomena (e.g., the perceived texture or appearance of the food."

The children in the Toufexis study met the criteria for ARFID. Most "had a paralyzing fear of some adverse consequence of eating normally," believing they would vomit or choke, and the food was contaminated. The three children, who expressed concerns about "getting fat" or body image, developed those thoughts later.

What is ARFID? "Avoidant and restrictive food intake disorder (ARFID) is a diagnosis in Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-V) (American Psychiatric Association 2013). Like other DSM-V disorders, the diagnostic criteria for ARFID describe a specific clinical presentation, without regard for etiology, response to treatment, comorbid symptoms, or even acuity of onset." - Toufexis

Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype

Murphy TK, Patel PD, McGuire JF, et al. Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype. J Child Adolesc Psychopharmacol. 2015;25(1):14-25. DOI:10.1089/cap.2014.0062

The study included 43 children with PANS and OCD, ages 4-14 years old.

47% had food restriction

23% (10) significant impairment related to food restriction (i.e., weight loss, dehydration, and/or hospitalizations), met criteria for ARFID

1 had food-related OCD symptoms only

9 had OCD symptoms related to food and other issues

Reason for Food Restriction

Food-related OCD symptoms included contamination from germs and/or toxins, poison, fear of vomiting, choking

Fear of weight gain

Use of IVIG for PANS PANDAS

Use of Intravenous Immunoglobulin in the Treatment of Twelve Youths with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. Miro Kovacevic, MD, Paul Grant, MD, and Susan E. Swedo, MD - JCAP Vol 25, No 1, 2015 - DOI: 10.1089/cap.2014.0067

Abstract: "This is a case series describing 12 youths treated with intravenous immunoglobulin (IVIG) for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS). Although it is a clinically based series, the case reports provide new information about the short-term benefits of IVIG therapy, and are the first descriptions of long-term outcome for PANDAS patients."

Patient A: Patient A was a 7.5-year-old with "initial OCD symptoms included intrusive thoughts, contamination fears (urine, saliva), repetitive compulsive behaviors..., the need to remember what foods she ate looked like, and avoidance of foods she feared she would not remember), and reassurance seeking." After several treatments including antibiotics, IVIG, steroids and CBT and several relapses, 4 years later she is reportedly doing "very well. "

Patient D: Patient D was a 9.5-year-old boy who "developed a fear of choking and chronic abdominal pain, and the resultant food refusal led to a 4.5 kg (20%) weight loss, hospitalization, and tube feedings. These symptoms persisted for *1 year prior to his evaluation and treatment." He was given prednisone, IVIG, and prophylactic antibiotics resulting in full remission for a year at the time of follow-up.

Patient G: Patient G was a 9-year-old boy with a history of sudden onset OCD, anxiety, and tics. He later developed more severe sudden onset severe PANS symptoms. "Most significantly, he developed compulsive, recurrent vomiting of all foods and liquids, including water, leading to a 7 kg weight loss. He was diagnosed with postinfectious gastroparesis, and fed exclusively via a nasojejunal tube." A steroid burst brought temporary improvements. IVIG created dramatic improvement, which allowed him to resume normal food intake orally and the removal of his nasojejunal tube. He did have some residual vomiting, which did not result in weight loss but did interfere with normal life. The second round of IVIG resulted in complete remission. He was still in remission at a three-year follow-up.

Patient L: Patient L was an 8-year-old boy who along with OCD and other PANS symptoms had "a number of ill-defined abdominal complaints that prompted a gastroenterological evaluation (with negative results) and that eventually led to the patient's complete refusal to eat. The patient lost nearly 25% of his body weight (declining from 22 kg to 17 kg) and was hospitalized numerous times for tube feedings and psychiatric interventions." Several SSRI's showed no benefit. Amoxicillin provided a small improvement in symptoms and allowed for stabilization in weight loss. Steroids and IVIG created remarkable improvements and the patient "was able to visit a restaurant (a previously unacceptable venue) and to eat a meal without difficulty." A second round of IVIG was needed after progress stalled and since recovery has held firm.

Conclusions: This case series demonstrates the benefits of IVIG therapy for youths with PANDAS/PANS, including those who had been symptomatic for several years prior to treatment. Although the generalizability of this retrospective report is limited, the selected cases represent the breadth of symptom presentations in PANDAS/PANS and provide additional evidence that IVIG may be useful in the management of children with moderate-severe symptoms.

Case Study of a Child with Anorexia Nervosa and PANS PANDAS

Clinical Case Rounds in Child and Adolescent Psychiatry: Certain Eating Disorders May Be a Neuropsychiatric Manifestation of PANDAS: Case Report. Cynthia V. Calkin MD; Carlo G. Carandang MD, ABPN (Dip) J Can Acad Child. Adolesc Psychiatry. 2007 Aug; 16(3): 132-135. PMID: 18421369

This case report describes an eight-year-old with PANDAS, OCD, Anorexia Nervosa (AN). "The OCD symptoms were not confined to the Eating Disorder (ED) and the ED symptoms were not exclusively OCD-based." "This case suggests that EDs, in some cases, maybe an autoimmune-mediated neuropsychiatric manifestation or a clinical sub-type of PANDAS. The patient in our case rapidly recovered from his ED and OCD. Perhaps by considering the proposed pathophysiology of PANDAS and by targeting the management of future GABHS infections, the usual course of EDs and OCD could be altered in patients believed to have an autoimmune etiology."

Clinical Case Rounds in Child and Adolescent Psychiatry: Certain Eating Disorders May Be a Neuropsychiatric Manifestation of PANDAS: Case Report

Cynthia V. Calkin MD; Carlo G. Carandang MD, ABPN (Dip) J Can Acad Child. Adolesc Psychiatry. 2007 Aug; 16(3): 132-135. PMID: 18421369

This case report describes an eight-year-old with PANDAS, OCD, Anorexia Nervosa (AN). "The OCD symptoms were not confined to the Eating Disorder (ED) and the ED symptoms were not exclusively OCD-based." "This case suggests that EDs, in some cases, may be an autoimmune-mediated neuropsychiatric manifestation or clinical sub-type of PANDAS. The patient in our case rapidly recovered from his ED and OCD. Perhaps by considering the proposed pathophysiology of PANDAS and by targeting the management of future GABHS infections, the usual course of EDs and OCD could be altered in patients believed to have an autoimmune etiology."

The patient is an eight-year-old boy with "significant weight loss," behavior changes, and recurrent GAS infections. After being taught healthy eating at school, he began reading food labels and avoiding certain foods. He began looking in the mirror and expressing concerns about his weight. Then he refused to eat his mother's food as he was distrustful of what she was putting in it. So he only at packaged foods that he determined safe. As a result, he was only eating 200 calories a day. After another strep infection, he developed tics and often did rituals before being able to eat; stating that they, "helps me to relax" and "It distracts me from the images in my head" as intrusive thoughts led him to think that he "must do the hand thing before you eat or the food will poison you" and "your Mommy is a criminal and contaminating your favourite things." He knew these thoughts were not real, but he was not able to prevent himself from doing them. Additionally, "he developed rules such as having to walk only on his father's right side so as to not 'give off (his) fat cells to people walking by."

"His weight dropped 8kg secondary to his food refusal and he was admitted to hospital at 75% ideal body weight with a score of 33 (extremely severe OCD) on CY-BOCS (Children's Yale-Brown Obsessive Compulsive Scale) (Scahill et al., 1997).... It was our opinion that he had PANDAS and he was diagnosed with OCD and AN." His treatment included re-feeding via an ED protocol, psychiatric medications, one was tolerated while one was not. He received CBT. As he continued to have PANDAS flares, he was given clarithromycin and started to gain weight. "After three weeks of treatment his CY-BOCS score was 19 (moderate OCD) and all choreoform-like movements had ceased. After five weeks of treatment he was no longer having any OCD thoughts and he was not engaging in any ritualistic behaviours." Once he was at a normal weight, he had a tonsillectomy and has remained stable for 11 months.

Case Study Anorexia Nervosa, OCD & Strep

Anorexia, OCD, and streptococcus. Henry MC, Perlmutter SJ, Swedo SE. J Am Acad Child Adolesc Psychiatry. 1999 Mar; 38(3):228-9. DOI: 10.1097/00004583-199903000-00002

Describes three cases of GABHS-triggered OCD in with obsessional fear of eating. In the first case, the child had typical OCD symptoms followed by a fear of fat contamination, leading to more common AN symptoms. In the second case, a 7-year-old boy had an abrupt onset of fear of eating after choking on pizza. He had a positive throat culture but with no pharyngitis, but antibiotics did not help. Then his OCD included excessive hand-washing and contamination obsessions; behavioral therapy helped. Later, after his sister had positive throat culture, he had an abrupt exacerbation of OCD symptoms. In the third case, a 6-year-old girl, one week after GABHS pharyngitis, developed a fear her food was contaminated. After symptoms did not resolve with an antibiotic, three weeks later, she was hospitalized and improved with sertraline and behavioral therapy. Then she had confirmed strep throat leading to another flare of abrupt contamination obsession. Antibiotics improved symptoms until she had a repeated PANDAS flare.

Case Study Infection-triggered Autoimmune Subtype of AN

Case study: an infection-triggered, autoimmune subtype of anorexia nervosa. Sokol MS, Gray NS. J Am Acad Child Adolesc Psychiatry. 1997 Aug; 36(8):1128-33. DOI: 10.1097/00004583-199708000-00021

The first case describes a 12-year-old boy whose AN worsened one month after an untreated severe upper respiratory tract infection with a negative throat culture but had elevated ASO and anti-DNase-B titers. Antibiotics alleviated his AN. The second case describes a 16-year-old boy who, after a series of URIs, had sudden OCD and failure to gain weight as he grew taller. He had a history of repeated GABHSpharyngitis and had an elevated anti-DNase-B titer. His symptoms resolved after a few months without treatment.

Prevalence of PANS in Child and Adolescent Eating Disorders

MBC Children's Hospital Research Institute, University of British Columbia. arya Aman, Jennifer Coelho, Boyee Lin, Cynthia Lu, Shannon Zaitsoff , John Best and S. Evelyn Stewart See Poster.

The surprisingly high lifetime PANS rate of 52% within pediatric ED was higher than that previously reported for OCD populations. The large majority had an abrupt onset of parent-reported OC symptoms as well as abrupt food restriction.

Those in the PANS group were more likely to be female, be prescribed an SSRI, and have parent-reported abrupt OC symptom onset, abrupt food refusal, relapsing and remitting course, and concurrent anxiety, depression, irritability or aggression, behavioral regression, school deterioration, and sleep problems, enuresis, and/or frequent urination.

This appears to be a distinct subgroup that requires further characterization with respect to functional impacts and management approaches."

Anorexia Nervosa Caused by Polymicrobial Tick-Borne Infections: A Case Study

Kinderlehrer DA. Anorexia Nervosa Caused by Polymicrobial Tick-Borne Infections: A Case Study. Int Med Case Rep J. 2021;14:279-287 DOI:10.2147/IMCRJ.S311516

This patient did not have PANS PANDAS but it links Tick-Borne Infections to Anorexia Nervosa.

"Conclusion: There is increasing support for the role of infections in the genesis of AN in some patients. The data suggest that autoimmunity is playing a prominent role in the pathogenesis of microbial-induced AN, and that role has been elucidated in children and adolescents with PANS. This is the first documented case of Lyme borreliosis complicated by three co-infections triggering AN. This adds to the existing literature that infections can play a more prominent role in AN. The corollary is that physicians should become aware of this association in the evaluation of patients with AN, as it may provide a treatment option for this serious and sometimes fatal condition. The possibility that tick-borne infections could underlie the diagnosis of AN warrants further study."

Obsessive-Compulsive Disorder With Rheumatological and Inflammatory Diseases: A Systematic Review

Alsheikh A M, Alsheikh M M (May 01, 2021) Obsessive-Compulsive Disorder With Rheumatological and Inflammatory Diseases: A Systematic Review. Cureus 13(5): e14791. DOI:10.7759/cureus.14791

This is not about PANS and ED in particular but it is about the link between ED and OCD. Since OCD and Severe Eating Restriction are both major criteria of PANS, we chose to highlight this recent study.

Difficulties controlling intrusive thoughts is a common symptom between eating disorders and OCD

Perfectionism symptoms bridge eating disorders and OCD

Restriction links to checking compulsions and rigidity

Binge eating links to hoarding symptoms

"The presence of intrusive cognitions and maladaptive perfectionism may contribute to the maintenance of co-occurring ED and OCD symptoms. These findings begin to delineate specific pathways among OCD and ED symptoms, which can be used in the development of interventions to disrupt connections among these disorders."

Treatment of children and adolescents with avoidant/restrictive food intake disorder: a case series examining the feasibility of family therapy and adjunctive treatment

Spettigue, W., Norris, M.L., Santos, A. et al. Treatment of children and adolescents with avoidant/restrictive food intake disorder: a case series examining the feasibility of family therapy and adjunctive treatments. J Eat Disord 6, 20 (2018). DOI:10.1186/s40337-018-0205-3

"This paper describes six adolescents with ARFID who were successfully treated with a combination of medication plus family therapy, and where indicated, targeted cognitive behavioural therapy. These cases illustrate the complex and various ways in which young patients with ARFID can present, the illness' effect on development and mental health, and the positive outcomes associated with weight gain and concurrent treatment for co-morbid anxiety disorders."

Other Eating Disorders

Eating restrictions as a result of PANS PANDAS is not merely picky eating. There are distinct differences between picky eating, ARFID, and Anorexia Nervosa.

About Avoidant Restrictive Food Intake Disorder (ARFID)

ARFID is not just picking eating; it is characterized by restricted food intake due to lack of interest in food, sensory avoidance, or fear of negative consequences. ARFID is different than anorexia nervosa because patients do not worry much about body image or their weight. Patients have underlying biological traits that initially made their eating habits a logical choice, but those food avoidance patterns become longstanding and difficult to change. ARFID was included in the 2013 Diagnostic and Statistical Manual, 5th Edition (DSM-5) as a type of eating disorder. Like other DSM-V disorders, the diagnostic criteria for ARFID describe a specific clinical presentation without regard for etiology, response to treatment, comorbid symptoms, or even acuity of onset. For full criteria, see NEDA. https://www.nationaleatingdisorders.org/learn/by-eating-disorder/arfid

ARFID Presentations

1. Lack of interest in eating and food and can get full quickly

2. Sensory avoidance leads to issues with food tastes, textures, temperature, and smells

3. Fear of negative consequences; fear of choking, allergic reaction, illness, choking

Warning Signs

Significant weight loss

Poor weight gain or growth

Only thinks a few foods are okay, haven't outgrown picky eating

Only eating foods with comparable characteristics - color, texture

Avoids a certain food group

Gastrointestinal pain

Nutritionally deficient - seen on lab findings

Emotional about eating certain foods

Social situations impacted by food choice constraints

Difficulty concentrating

Sleep problems

Impaired immune function

Other Physical signs such as

Dizziness, fainting

Menstrual irregularities

Thin hair, brittle nails, dry skin

Feeling cold

About Anorexia Nervosa (AN):

Anorexia nervosa is an eating disorder characterized by weight loss (or gain in children), challenges sustaining a healthy weight, and distorted body image. People with anorexia restrict calories and types of food; they may purge, exercise excessively, or binge eat. One does not have to be underweight to have anorexia. For specific DSM-V information, see NEDA.

1. Extreme fear of gaining weight or being overweight

2. Extreme restrictive eating leads to significantly low body weight and/or weight loss and inability to maintain nutrition and energy

3. Preoccupation with an imagined or slight defect in one's appearance - disproportionate importance placed on the evaluation of one's shape or weight or denial of the gravity of too low body weight

Lecture Slides/Recordings/Other Resources

Disordered Eating in Children & Adolescents with PANS. SANE Sweden 2019 PANS Conference Cynthia Kapphahn, MD, MPH, Medical Director-Comprehensive Eating Disorder Program, Clinical Professor, Pediatrics-Division of Adolescent Medicine, Stanford University School of Medicine. Access Slides

Cognitive Behavioral Therapy for Avoidant/Restrictive Food Intake Disorder (CBT-AR): Patient and Family Workbook. Thomas, J.J. and Eddy, K.T. (201 9 ). Cognitive - Behavioral Therapy for Avoidant/Restrictive Food Intake Disorder: Children, Adolescents, & Adults . Cambridge: Cambridge University Press. Access Workbook

, Recovery Record How to treat patients with ARFID via telehealth. Jennifer J. Thomas, Ph.D. Eating Disorders Clinical & Research Program, Massachusetts General Hospital Department of Psychiatry, Harvard Medical School Elissa Chakoff, M.Ed., Ed.S., LMFT Watch Video & Access Slide

Provincial Specialized Eating Disorders Program Eating Disorders in the School Context: What School Professionals need to know and what they can do. Tom Bauslaugh, MA, Karen Dixon, MSW, RSW BC Mental Health and Substance Use Services Access Slides

Books

Please see ASPIRE's Book section.

Other Handouts on PANS & Eating Restrictions

PANS and Restricted Eating Awareness flyer (available to download in poster sizes). Several ASPIRE PANS PANDAS fliers are available for you to print in three sizes, one letter-size paper, and two poster sizes. The .pdf version below is an 8.5×11 paper size. If you would like the 11×14 or 16×20 poster version for you to download and print for an event, please contact Gabriella True directly so we can know about your event and help promote it.

Restrictive Eating at School flyer Please also see ASPIRE PANS in the School Setting website section with toolkit and School Nurse Role website section with toolkit.

PANS & Restrictive Eating Flyer & Poster
Eating Disorders at School
Return to Section:
Handouts & Brochures

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PANS & Eating Disorder/Food Restrictions & Toolkits/Handouts - Aspire

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If your child has new or suddenly increased food avoidance or eating restriction along with other behavior, neurological or cognitive changes, it might be due to PANS/PANDAS. Food restrictions and OCD are the two top-tier symptoms of PANS.

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The goal of accommodations is to help the student access the curriculum, be involved and progress in their education regardless of having PANS/PANDAS. Accommodation and supports can help PANS students remain functional in school during a flare. Remedial support after flares can help the student regain skills lost during a flare.

Communication & Collaboration. Communication and collaborating as a team to frequently assess the student's need is essential due to the relapsing and remitting nature of PANS. Communication between parents, nurse, teachers, and staff must be established and encouraged. Sudden changes in behavior and health status should be communicated rapidly in order to adjust the level of supports. An IHCP can ensure supports are in place and communication is enforced. (See below for more on Communication & Collaboration.)

Attendance Impacted. PANS significantly impacts attendance for most PANS students. Modification in attendance policy may be necessary. Modifications may range from allowing for multiple late arrivals to considering temporary home-hospital placement. Modifications to the schedule may be warranted. (See below for more on attendance.)

Contagious Disease Health Alert. Protocols should be set to alert the family via the School Nurse if strep or other infections are reported. PANS Students may have symptom activation simply by being exposed to a student with an infection. School nurses should send informational notices about the impact of illness, such as strep to the class/school. Notices should include why it is important to receive treatment, when can a child return to school, how to prevent its spread, and why it is important to report if your child has strep or another communicable illness. Requesting parents to report an illness does not violate privacy laws when the notice names no students and opens with a general statement such as, "We are seeing an increase in the reported cases of Strep throat." (See below for examples of School Nurse letters.)

Permanent/Semi-Permanent Hall Pass. Many students experience urinary frequency; allowing low-key access to a bathroom pass reduces class interruption and student stress. A Hall Pass facilitates access to a "safe place" during times of exacerbated symptoms.

Minimize Stress & Incre ase Positive Reinforcement. Stress can increase symptom severity and increase recovery time. Providing positive reinforcement rather than focusing on negative behaviors, reduces stress.

Provide reassurance and celebrate successes.

Manage antecedents to prevent behavior issues.

Attempt to redirect behaviors rather than reprimanding.

Create a plan to deescalate anxiety. Train all staff working with the student on the procedures.

Allow for breaks in the daily schedule as needed.

Allow For Options and Be Flexible. Depending on symptoms, it may be helpful to allow the student to show mastery of a subject in different ways.

Allow for late work without a grade reduction.

Allow for assignments to be redone.

Let students choose how to complete assignments, for example, typing, recording or handwriting assignments.

Allow for homework accommodations: Many students work extremely hard to "hold it together" during the school day and then fall apart at home. These students may be physically and mentally unable to complete homework assignments.

Provide students with laptops.

Give extended time on all testing

Provide sensory supports such as fidgets, special seating, and lighting adjustments.

Create Specialized Behavior Plans. Differentiate between "choice-based" behaviors and neurological symptoms resulting from an encephalitic process. It is important to not blame students for involuntary actions that are a manifestation of their illness. It may be more beneficial to prevent behaviors than to punish them; creating a supportive classroom with sensory supports, break times, safe places, and assignment options can help. Drawing attention to some behaviors may only exacerbate them. Traditional functional behavior assessments (FBAs) are directed by the principle that all behaviors stem from either wanting to avoid something (a task, attention, sensory input) or to gain something desired (preferred items, attention). Traditional FBAs and behavior intervention plans (BIP) can be written but input from the student's doctor and/or therapist helps to ensure that neurological symptoms are not misidentified as behaviors and inappropriately intervened. For example, some repetitive noises and movements may actually be tics, some behaviors that look like non-compliance may result from being physically ill or from intrusive thoughts, or rage episodes may be a result from brain inflammation, etc. Assessing whether behaviors are involuntary or voluntary can be difficult but understanding that one must look at behaviors from both angles is a good start.

Learn more about PANS PANDAS Accommodations for Specific Symptoms
PANS PANDAS Symptom Accommodations
Learn more about how PANS PANDAS Impacts multiple domains of learning
PANS PANDAS Impact on Learning

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Accommodations Across All Grade Levels & All Levels of Need - Aspire

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The goal of accommodations is to help the student access the curriculum, be involved and progress in their education regardless of having PANS/PANDAS. Accommodation and supports can help PANS students remain functional in school during a flare. Remedial support after flares can help the student regain skills lost during a flare.

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PANS students require a variety of accommodations to support the multiple symptoms across the learning domains.

The level of support is contingent upon the severity of symptoms. Below is a list of a wide range of supports based on those commonly utilized for PANS students as well as widely used for students with that specific symptom like students with OCD, ADHD, etc. Every student will not need every accommodation nor is every accommodation for a particular symptom listed. Some supports are contingent on grade level. Supports must be individualized. Plan for the worst symptoms and hope for the best; in preparation for a flare, including all appropriate accommodations so school staff can react and implement quickly.

"Therapy can be instrumental in negotiating exacerbation, but doing so requires a paradigm shift. Children often lose skills during exacerbation, and traditional remedial intervention may be ineffective. Greater benefit may be found with adaptation and compensation for problems during exacerbation, followed by remediation of ongoing problems during remission."
PANDAS: A New Frontier for Occupational Therapy Intervention Janice Tona & Trudy Posner

Academic/Cognitive Symptoms
Math Regression

Math Facts, Formula Sheets, Calculator for simple computation

Extended time on tests

Shortened Assignments

Manipulatives

Dysgraphia

Keyboard/Assistive Technology

Built-Up pencils

Graph paper/raised line paper

Grade work on content rather than neatness

Use a recorder to give answers verbally

Language Issues

Extra Time for expressive & receptive language

Less reading out loud

Assisted Technology/Augmentative communication

Speech Therapy

Organization

Assignment Planner: Weekly layout, keep a pen with it, and clip the current week

Homework Binder with a log for parents to communicate with the teacher

Graphic Organizer & Outlining Programs

Long Term School Projects: Break down into segments with separate goal dates (topic selection, research, outline, first draft, final draft)

Color Code Subjects

Extra Set of Books for home use

Buddy to help take notes

Schedule time to clean desk/locker

Preferential seating & distraction-free study area

Memory Management

Reduce stress & distractions

Management: Lists, Timers, Calendars

Repetition of Information

Recording devices

Provide lecture notes/outline

Earphones to block stimuli

Movement breaks

Assistive technology

Lists: paper, dry erase boards

Timers/Calendars: electronic devices

Behavioral Symptoms
OCD

Support/Reinforce Therapies: Cognitive Behavioral Therapy (CBT), Exposure and Response Prevention (ERP)

Group Activities: Allow a separate set of materials

Allow early class dismissal to avoid crowds in hallways

Obsessions:

Allow "interrupter" when stuck (snapping band on the wrist)

Identify special words/prompts for the teacher to interrupt obsessions

Goal for curbing repetitive questioning

Compulsions:

Alter Work Sequence/ Alternative Schedule if stuck on section or task

Identify & substitute less disruptive behaviors

Use a timer to signal transitions.

If the student is continually erasing work, allow a computer

Safe Space to release compulsion during day

Allow spell check/calculator to be used one time at the end in case of anxiety/perfectionism

Anxiety

Relaxation Techniques: yoga, imagery,

Safe Space - Safe Person

Cool Down Pass

Class Participation: fears range from inaccuracy to being looked at by peers, consider starting with close-ended questions or opinion questions.
Signal child it is almost their turn. Exempt participation as needed.

Class Presentations: Reports can be given to the teacher alone or videotaped at home.

Testing: Extended time. Alternate testing location if anxiety increases by watching other kids turn in work quickly

Lateness

Late slip on file

Temporary later start time

ADHD

Extended Time

Frequent Breaks

Exercise Breaks

Redirection

Written Directions

Preferential Seating: close to the teacher, away from window/door

Fidget Toys

Testing: Extra/Unlimited Time, Separate testing location if needed

Lighter homework load

Alarm Reminders to keep the student on task

Mood Changes

Calming Techniques

Safe Space - Safe Person: ID 1 person to check in with for 5-10 minutes to ease mood changes to enable the return to class.

Cool Down Pass to allow the child to leave the situation briefly. Use a card to signal teacher, so the student does not become the center of attention

Note: Negative discipline escalates the behavior. Their world is falling apart but they need a safe place where they can be and want to be, even fighting fears that they have left home.

Sensory

Sensory Supports: pressure, weighted vests, proprioception

Sensory Seeking: varying tactile input

Sensory Defense: low light, quiet space, decrease stimulation, muted colors

Physical Symptoms
Tics

Nurse Breaks

Reading/Writing: Assistive Technology and allow oral Responses

Weighted blankets

Vocal Tics: Less reading aloud.

Testing Modifications

Mobility Issues

Adaptive PE

Physical Therapy

Field Trip accommodations/support

Urinary Frequency

Low Key Bathroom Access

Track frequency

Fatigue & Low Tone

Time to rest

Healthy snacks

Modified physical activities

Encourage endurance without overdoing it

Strengthening exercises during remission

Learn more about Generalized Accommodations for PANS PANDAS
PANS PANDAS General Accommodations
Learn more about how PANS PANDAS Impacts Multiple Domains of Learning
PANS PANDAS Impact on Learning

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The level of support is contingent upon the severity of symptoms. Below is a list of a wide range of supports based on those commonly utilized for PANS students as well as widely used for students with that specific symptom like students with OCD, ADHD, etc.

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Taking the time to communicate and collaborate as a team is a key part of ensuring a PANS student's success.

PANS recovery is not a straight trajectory. PANS is relapsing and remitting, and there can be setbacks during periods of treatment and healing. Communication helps the team (parents, school staff, therapists, doctors, etc.) assess how the patient/student is doing and what courses of action the team needs to take. The school team may include teachers, nurse, and social worker but may also need to extend to include occupational, speech, and physical therapists, and staff that can support executive functioning and social skills support.

"The identification of PANDAS symptoms in the school setting requires a cooperative effort. Any teacher who comes in contact with a child should be alert for sudden behavioral changes... Open and ongoing home - school communication may be essential."
PANDAS in the School Setting by Kathy O'Rourke, MA School Nurse News-2003

Sometimes the school is the first to identify signs of an oncoming flare. When the team is aware of changes in the student's symptoms, the team is better equipped to assess and implement supportive strategies.

The school team (teachers, staff, therapists, specialists, nurse) must communicate with each other to share and learn strategies to support the student.

Parents and school should report any changes in physical, emotional and/or behavioral symptoms including but not limited to changes in school performance, behavior, eating habits, urinary frequency, tics, etc.

Schools should frequently check on the student to see how they are doing. Health checks help establish trust and collaboration between the student and teacher as well as inform the teacher and parents on the student's health status.

School should communicate with student consistently about expectations and how to utilize accommodations. Also, teachers should provide positive feedback on the student's efforts and accomplishments.

School should inform parents of any communicable illness in classrooms.

Parents should inform the school nurse of any health changes.

Parents should communicate with staff about specific behavioral health interventions utilized in therapy and at home so the school can reinforce them. Communication between therapists and school may be necessary.

Parents should communicate with the school nurse and staff about specific medical issues and treatments to help plan appropriately for absences and/or new issues that affect schoolwork.

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PANS recovery is not a straight trajectory. PANS is relapsing and remitting, and there can be setbacks during periods of treatment and healing. Communication helps the team (parents, school staff, therapists, doctors, etc.) assess how the patient/student is doing and what courses of action the team needs to take.