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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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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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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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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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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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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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Verifying you are human. This may take a few seconds.

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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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Could it be PANS/PANDAS... Be Curious! | Autistic Realms

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This collection of text and images was created collaboratively by neurodivergent educators, working together to shine a light on this often-overlooked area…

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Frequently Asked Questions - PANS PANDAS UK

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Welcome to PANS PANDAS UK. This is our Frequently Asked Questions page.

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

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

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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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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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SENsational Tutors – PANS/PANDAS - SENsational Tutors

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9th October is PANS/ PANDAS awareness day, but what is PANS/ PANDAS? WHAT IS PANS/PANDAS? Many parents of children with special needs have a niggling suspicion that something might be ‘different’ about their son or daughter, long before the diagnosis arrives. They may have noticed, for example, that the child is: Highly anxious Developmentally behind […]

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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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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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SEND in the experts with Georgina Durrant

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PANS/PANDAS? - Georgina Durrant, in conversation with PANS PANDAS UK  (Audio only version)

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PANS and PANDAS Q&A, hosted by Jo Joyner

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Sarah Johnson- All about SEMH includes reference to PANDAS

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Sarah Johnson- All about SEMH includes reference to PANDAS

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

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PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)

PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

PANS and PANDAS are post-infectious medical conditions which affect both physical and mental health. They can be triggered by common infections (for example strep throat, chickenpox, influenza or Covid 19). These conditions mainly affect children, and onset usually happens between 3 and 13 years.   PANS can also affect adults. Whilst more research is needed, current evidence suggests that early identification and treatment leads to better outcomes and teachers have a crucial role in spotting the early signs.
Why have I never heard of them?
PANS and PANDAS used to be thought of as controversial diseases. This has now all changed and the NHS recognises both PANS and PANDAS. PANDAS is also recognised by the World Health Organisation. There are no NICE guidelines and clinicians in the UK are currently in the early stages of discussing clinical treatment pathways.

Awareness of the conditions is currently low amongst medical, social care and educational professionals although this is now slowly changing. Updated medical Information for CAMHS and GP's will be shortly rolled out, and an increasing number of schools are reporting that they are supporting children with these diagnosis'. These numbers are only set to increase.

How many children are affected in the UK?

A good question and one that unfortunately can't be answered very effectively at this stage. The positive news is that clinicians in the UK are at an early stage of gathering the incidence data. Once this has been gathered we will have a better picture of the scale of the issue.

Why are these conditions not included in teacher training?

Historical disagreements about the medical classification and treatment of the conditions alongside a lack of incidence data have all contributed to low levels of awareness. This has been across the board of professionals. Things are now changing in both the medical and education world. Discussions are already underway to include the conditions as part of core teacher training at some universities, there are also a growing number of educational resources available and the PANS PANDAS UK charity is listed on more than 100 Local Offers, but there is a long way to go.

What might I see in the classroom?

Essentially you are looking for a child/young person experiencing multiple unexplained changes in the classroom. Symptoms are broad ranging and can include obsessive compulsive behaviours, tics, eating restrictions and further cognitive, physical, behavioural and emotional signs. Some of the signs you can spot are unusual and may not fit with previous training about the development of learning difficulties. For example, in PANS/PANDAS children/young people can abruptly develop executive functioning difficulties with no emerging signs of issues or handwriting can dramatically deteriorate seemingly out of the blue.

The symptoms of PANS and PANDAS also have overlapping profiles with other conditions that you will be aware of such as ASC or ADHD. It can be very easy to misinterpret the root cause of the symptoms. Children/young people can of course have more than one condition.

What are my next steps as a teacher?

Talk to the child/young person (as appropriate) and their families and be aware that it is not unusual for children/young people to be presenting differently at home and at school. Ensure that you give due attention to all of the changes (alongside clearly stating how the child/young person was presenting before) and provide supporting evidence for families to take to their GP. Remember that PANS and PANDAS are medical conditions that can only be diagnosed by a medical practitioner.
How can I provide support in the classroom?
Every child with PANS and PANDAS is different so there will be no one size fits all approach. Some helpful steps though include:

Capture the baseline of the child/young person i.e. how they were functioning in all areas before the first reported symptoms. Ensure that you track that the child/young person is returning to their baseline following a 'flare' up of their symptoms

Follow the guidance for supporting children with medical conditions. Some children with PANS or PANDAS will benefit from having an Individual health care plan.

Be aware of the unusual characteristics of these conditions, for example the unexpected development of special educational needs. The rapidity of onset can require a very agile response to putting in support.

PANS and PANDAS can be very confusing and present with a shifting picture of changing symptoms. Support will need to be very flexible to respond to changing needs. Whilst the accommodations required may well align with the support given for other learning needs for example working memory issues, sensory needs, writing difficulties etc, the following variables should also be considered :

In PANS/PANDAS the needs are caused by a medical condition affecting the brain.

Needs in these conditions can be very confusing with a continually changing profile. Learning difficulties for example can be transient/fluctuating rather than relatively stable and longer term.

The conditions can unusually rapidly affect a child in multiple different areas of their functioning, so any assessments will need to be aware of the potential breadth of difficulties.

The child/young person is additionally coping with the psychological challenges of changes in their ability at school and in their self-identity.

Understanding around attendance. PANS and PANDAS can affect a child's/young person's ability to attend school, and there may be periods where they are too unwell to attend. Ensure that a proactive plan is in place to support connection and support during these periods.

Awareness that PANS and PANDAS can be very traumatic for children/young people and their families. Support with a child led nurturing approach and remember that siblings may well also require significant pastoral support.

Where can I get further help and support?

PANS PANDAS UK is the only UK charity currently supporting families and children with these conditions.

Further education resources are available here https://www.panspandasuk.org/education

A guide to spotting the early signs at home and at school

https://www.panspandasuk.org/_files/ugd/c803db_8d20d15927f54143b2316b8d634348a0.pdf
https://www.twinkl.co.uk/resource/pans-pandas-information-and-cpd-pack-t-s-1643108429
As part of the CPD- TeachMeet series from Twinkl, there is a free training session 'Supporting Children with PANS and PANDAS in Educational settings' on Monday 22 nd January at 4pm.
https://www.eventbrite.co.uk/e/supporting-children-with-pans-or-pandas-in-educational-settings-tickets-764441052767?aff=ebdsoporgprofile

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We have put together some common questions and answers for teachers to give an insight into PANS/PANDAS, what to look out for in the classroom, and what next steps to take

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SEND network members interview- PANS and PANDAS

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SEND network members interview- PANS and PANDAS

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Membership Interview with Tina Coope (PANS PANDAS UK)

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Today (9th October) is PANS PANDAS awareness day, Tina Coope from PANS PANDAS UK joins Torie Hart to discuss the condition, her role at the charity and what they are doing to help children and young people with PANS PANDAS

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Have you noticed a child or young person with multiple unexplained changes in the classroom? – Opogo Community

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Paediatric Acute-onset Neuropsychiatric Syndrome PANDAS – Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections

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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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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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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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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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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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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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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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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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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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Sinclairslaw Education Magazine Podcast- Current challenges re PANS and PANDAS including education and safeguarding.

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Sinclairslaw Education Magazine Podcast- Current challenges re PANS and PANDAS including education and safeguarding.

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https://www.youtube.com/watch?v=Y2b7w5tgCVY

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Education Magazine - Series 3 Episode 1 - PANS PANDAS

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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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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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(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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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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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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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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Infection and speech: Disfluency and other speech symptoms in Pediatric Acute-onset Neuropsychiatric Syndrome - PubMed

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Affiliations

1 Karolinska Institutet, CLINTEC, Division of Speech-language pathology, Stockholm, Sweden; Autismcenter små barn (the Autism center for small children), Rosenlund Hospital, Tideliusgatan 12, Stockholm, 11869 Sweden. Electronic address: una.prosell@sll.se.

2 Karolinska Institutet, CLINTEC, Division of Speech-language pathology, Stockholm, Sweden; Logopedbyrån Dynamica, Hammarby Allé 91, Stockholm, 120 63 Sweden. Electronic address: hanna.norman@logopedbyran.se.

3 Division of Speech and Language Pathology, Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Sweden.

4 Karolinska Institutet, CLINTEC, Division of Speech-language pathology, Stockholm, Sweden; Karolinska University Hospital, Theme Women's Health and Allied Health Professionals, Medical Unit Speech and Language Pathology, Stockholm, Sweden.

Free article

Free article

Affiliations

1 Karolinska Institutet, CLINTEC, Division of Speech-language pathology, Stockholm, Sweden; Autismcenter små barn (the Autism center for small children), Rosenlund Hospital, Tideliusgatan 12, Stockholm, 11869 Sweden. Electronic address: una.prosell@sll.se.

2 Karolinska Institutet, CLINTEC, Division of Speech-language pathology, Stockholm, Sweden; Logopedbyrån Dynamica, Hammarby Allé 91, Stockholm, 120 63 Sweden. Electronic address: hanna.norman@logopedbyran.se.

3 Division of Speech and Language Pathology, Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Sweden.

4 Karolinska Institutet, CLINTEC, Division of Speech-language pathology, Stockholm, Sweden; Karolinska University Hospital, Theme Women's Health and Allied Health Professionals, Medical Unit Speech and Language Pathology, Stockholm, Sweden.

Abstract

Introduction: In the early 20 th century a link between infection and speech disfluency was discussed. Recent reports indicate that PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) may be associated with a high incidence of speech disfluency. The present study specifically investigates disfluency and other speech symptoms following onset of PANS and PANDAS. Prevalence of previously reported speech related symptoms vocal tics, selective mutism and "baby talk" is included. The present study also aims to explore possible changes in articulation and intelligibility, distress due to speech impairment, and effect of PANS or PANDAS medication on speech symptoms.

Methods: A questionnaire was distributed to caregivers of children with diagnosed or suspected PANS or PANDAS. In total 55 individuals in Sweden were included.

Results: Onset of speech disfluency in association with PANS or PANDAS was reported by 54.5% of the caregivers. Most frequent disfluency symptoms were higher speech rate, superfluous verbal behavior, verbal blocks and associated motor symptoms. Previous findings of vocal tics, baby talk and mutistic behavior are supported. The present study also exposed previously unreported symptoms such as impaired articulation, reduced intelligibility, reduced speech production and language impairment. Eleven caregivers reported that medical treatment had a positive effect on speech fluency.

Conclusions: A connection between PANS and PANDAS and speech disfluency is supported, and a possible link between infection and disfluency is reactualized. Reported disfluency shares several characteristics with stuttering and cluttering, but the caregivers did not consistently associate it with stuttering. The present study also sheds new light on how symptoms of "baby talk", selective mutism and vocal tics might be viewed in this population. In all, the results indicate a substantial impact on speech fluency, speech and language in affected children, reducing quality of life.

Keywords: Articulation; Autoimmune encephalitis; Cluttering; Infection; Language impairment; Neuropsychiatric syndrome; PANDAS; PANS; Pediatric acute-onset; Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections; Speech disfluency; Speech rate; Stuttering.

Conflict of interest statement

Declaration of Competing Interest None of the authors report any conflicting interests.

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national center for biotechnology information

# data[].attributes.attachment_link.title
Infection and speech: Disfluency and other speech symptoms in Pediatric Acute-onset Neuropsychiatric Syndrome - PubMed

# data[].attributes.attachment_link.description
A connection between PANS and PANDAS and speech disfluency is supported, and a possible link between infection and disfluency is reactualized. Reported disfluency shares several characteristics with stuttering and cluttering, but the caregivers did not consistently associate it with stuttering. The ...

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Nurses' Role in PANS/PANDAS

What role do nurses play in helping families with PANS/PANDAS?

Nurses are an integral part of the team. Nurses are often the first point of contact during an office visit. It is crucial for nurses not only to recognize PANS/PANDAS symptoms but also to understand how assessments are done and the basics of the treatment guidelines.

"PANS is a syndrome that can be associated with severe manifestations. It is important for primary care advanced practice registered nurses, to recognize the symptoms described and to screen for safety, initiate treatment for infection, and ensure adequate pharmacologic and nonpharmacologic management of the disorder." - Elizabeth Heavey, PhD, RN, CNM, Kathleen Peterson, PhD, RN, PCPNP-BC, Treating pediatric acute-onset neuropsychiatric syndrome.

Learn more about School Nurses for PANS/PANDAS
Nurses' Role in PANS/PANDAS

Aid in identifying PANS/PANDAS

Provide education on treatments, symptoms, symptom management

Provide support

Help coordinate follow up care

Connect families to resources such as ASPIRE

Assess safety issues

Administer IVIG as prescribed

Nurses, during comprehensive assessments, can help make connections between the onset of symptoms and history and signs of infection. Nurses can recommend appropriate testing based on information collected during the assessment. For example, a nurse may record a history of sudden onset of neuropsychiatric symptoms soon after a sore throat or upper respiratory infection and therefore recommend testing for GABHS or mycoplasma pneumoniae.

"Nurses often develop strong relationships with patients. Nurses are knowledgeable about the healthcare system, spend a great deal of time with patients and their families, provide care and support beyond the basics, and are perceived as being honest and trustworthy. A family dealing with the challenges of a PANDAS diagnosis will benefit from your knowledge, care, and honesty." - Joyce O'Reilly, MSN, MPA, RN, What you need to know about the strep throat complication of PANDAS

As most patients experience a sudden onset of symptoms, families are suddenly in a world they have little to no experience with. They are not familiar with the symptoms, how to navigate the healthcare system, or what other providers they could possibly access. Nurses can help provide much needed information to families about PANS/PANDAS and its symptoms, including OCD, anxiety, and tics, regression, etc. They can also explain to caregivers the symptom course of PANS/PANDAS, how it relapses and remits, often with a sawtooth recovery. Nurses can explain how to monitor the patient's symptoms and infections (or other triggers) during flares. Nurses can educate families on how to administer treatments and explain why adherence to treatment and appointments is so important.

"Collaboration with other healthcare professionals is a key aspect to making the correct diagnosis and treating the whole family unit. Patient education includes ensuring families know how to properly administer treatment, monitor for, and manage the symptoms of PANS, as well as coordinate necessary follow-up care." - Elizabeth Heavey, PhD, RN, CNM, Kathleen Peterson, PhD, RN, PCPNP-BC, Treating pediatric acute-onset neuropsychiatric syndrome.

A nurse who works with many PANS/PANDAS patients will be able to help connect patients and caregivers to other resources and providers.

Nurses should also screen for safety issues, especially in severe and chronic cases. Nurses can also help coordinate follow up care.

Understanding the Caregiver Experience

APRNs and PNPs must understand the human aspects of PANS/PANDAS as symptoms are often so distressing. It is essential to understand the Experience of patients and families living with PANS/PANDAS. Please see Common Themes from the Caregiver Experience.

Pediatric Nurse Practitioner Programs

Pediatric Nurse Practitioner (PNP) Programs should include information on PANS/PANDAS. Curriculums should incorporate, how to recognize symptoms, how to diagnose, how to treat appropriately in their practices.

"PNP programs need to include the new and growing disorder of PANDAS into their curriculums so new PNPs will recognize it, diagnose it, and appropriately treat the condition in their practices. Nurse educators need to teach all APRN and nursing students about the complex of autoimmune neuropsychiatric disorders to increase the likelihood of proper treatment, early and accurate diagnosis, and appropriate referrals." Molly McClelland, PhD, RN, Implications for APRNs When PANDAS Is Suspected
Sources:

What you need to know about the strep throat complication of PANDAS, Joyce O'Reilly, MSN, MPA, RN, My American Nurse, 2018,

Treating pediatric acute-onset neuropsychiatric syndrome, Heavey, Elizabeth PhD, RN, CNM; Peterson, Kathleen PhD, RN, PCPNP-BC, The Nurse Practitioner: March 2019 - Volume 44 - Issue 3 - p 44-49 doi: 10.1097/01.NPR.0000553400.88847.5d

Implications for Advanced Practice Nurses When Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS) Is Suspected: A Qualitative Study, McClelland, Molly, PhD, RN et al. Jnl Ped Health Care, V29, I5, 442 - 452 doi.org/10.1016/j.pedhc.2015.03.005

Nurse Registry

ASPIRE - School Nurses & PANS/PANDAS Link On website

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, PhD, RN, NASN School Nurse, 30(2), 96-104. doi.org/10.1177/1942602X14554607

Learn more about the School Nurse Role for PANS PANDAS
School Nurse Role

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Nurses' Role in PANS/PANDAS What role do nurses play in helping families with PANS/PANDAS? Nurses are an integral part of the team. Nurses are often the first point of contact during an office visit. It is crucial for nurses not only to recognize PANS/PANDAS symptoms but also to understand how assessments are done and the [...]

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Therapy for Siblings of Children with PANS PANDAS - Aspire

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How therapy can help support a sibling of a child with PANS PANDAS

Counseling can serve many purposes and each family's specific needs should drive goals. Children with siblings with special needs often have many challenges and struggles in common. These siblings experience an array of stressors and feelings that can increase their risk for significant emotional and behavioral problems and functional impairments. One can be proactive by seeking counseling while these events unfold. This can help ensure a more positive outcome for the child by nurturing their needs while they are young and still vulnerable.

Four Ways Therapy Can Support Siblings of PANS PANDAS Children
Allows a safe space for siblings to share their feelings about the situation openly
Children may not be willing to share their feelings with their parents honestly. They may feel like doing so will make them more of a burden to the already stressed parent, and therefore, they often suppress negative emotions. The sibling may feel guilty about having such negative feelings, and therapy can help normalize these emotions. A sibling support group allows siblings to see they are not alone in their struggle with these feelings. Support groups also help them feel connected and feel less isolated when they share with others with similar lives.
Educates the child and raises awareness about the sibling's condition
Educating children on their sibling's condition allows for a deeper understanding of how and why their sibling's behaviors and medical condition have affected the entire household. Children may feel confused and reluctant to ask questions about their sibling and their illness. Their acceptance and ability to tolerate behaviors they may feel are annoying or stressful may improve if they understood the "whys" about this disorder. Information about their sibling's condition should always be age-appropriate and as simple as possible for them to understand it better.
Provides an hour devoted only to them to allow for some small talk and make them feel important
The undivided attention during a therapy session can help nurture a child's needs. Each session doesn't always have to be serious and goal-oriented. The rapport between the therapist and child can serve an essential purpose in the child's life. Siblings can feel pushed aside at home when they always have to take the back seat to meet their sibling's needs. This time set aside for them will allow them to share anything they may not have an opportunity to share at home. It could be how they scored some points for their team in gym class or how they enjoyed a new book the teacher read aloud at school. Activities and accomplishments that may seem trivial can be of great importance in a child's world.
Teaches them coping strategies when situations become very stressful at home
Children often easily absorb negative energy and stress in their environment. They may feel a need to find a way to alleviate stress for the parent. When a sibling does this repeatedly, it can lead to parentification, which is when a child feels obliged to act as a parent to their own sibling. They need to be relieved of feeling that sense of responsibility and be permitted to remove themselves when circumstances become intense in the home. They should be encouraged to retreat to their bedroom or any space in the home that will allow them to feel safer. Create a plan to help that works for the entire family. For younger kids, there may be a designated space in the home they can occupy in these moments. For older kids, their bedroom may be an appropriate place for them to be in while they use headphones to "tune out" the noise when things escalate in the home. Children need to have a safe spot in their home when situations with their siblings become very stressful.
More Sibling Support
Lori Phelan, LMSW

Lori Phelan, LMSW lives on Long Island, NY. She studied Psychology at SUNY at Stony Brook as an undergraduate and graduated with a Master's in Social Work in 2000. Lori worked as an in-home ABA provider for children with Autism Spectrum Disorder and was a parent trainer for 19 years. She worked as an Autism Specialist/Social Worker for Sachem Central School District for eight years. Lori is the mother of 2 daughters with PANS since; her daughters were diagnosed in 2015. Her current plans include working as a therapist to serve families navigating PANDAS/PANS. Lori likes to hike, cook, do yoga, study nutrition, and play Rummikub with the family in her free time.

Return to section:
Behavioral Health

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Therapy for Siblings of Children with PANS PANDAS - Aspire

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How therapy can help support a sibling of a child with PANS PANDAS Counseling can serve many purposes and each family's specific needs should drive goals. Children with siblings with special needs often have many challenges and struggles in common. These siblings experience an array of stressors and feelings that can increase their risk for [...]

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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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We know there is no parenting playbook; there certainly isn't one when you add PANS/PANDAS to the mix. As parents, we are often second-guessing our decisions. So, as you read this section on supporting siblings of PANS/PANDAS patients, remember, every household, sibling, and PANS/PANDAS patient is unique. What we need to adjust, support, and explore is going to be different. Each one of our children needs us, and each one of their needs is equally important. Some days we simply can't shield siblings from the stressors caused by PANS/PANDAS. That is okay. We need to be conscientious of the ways we can alleviate the stress and find means to encourage our kids to express their feelings, so no one feels isolated or invalidated. When we don't handle a situation the way we want to, take a moment to acknowledge it, forgive ourselves, and continue to work on it. Always remember PANS/PANDAS is hard, we are not perfect, and we need to be gentle with our family and ourselves. - Gabriella True

Helping siblings feel supported, empowered, and independent can help them have more positive feelings about their sibling with PANS PANDAS. You can't prevent their life from being affected but giving them space and protection from feeling that the weight of their sibling's struggle is on their shoulders is essential.
PANS/PANDAS does not just affect the person with the diagnosis. It affects the entire family. The sibling's experience is essential to pay attention to and address. Since many families have multiple children with PANS/PANDAS, the sibling experience can be especially unique. The bottom line is siblings have individual needs themselves. We often hear about all the positive things having a special needs sibling teaches you: being empathetic, resilient, and responsible, but at the same time, there is a significant burden that this role places on their shoulders. We must pay attention to each child's needs to begin to relieve their complex struggles.
Some of the Positives Experienced by PANS/PANDAS Siblings

As hard as living with PANS/PANDAS is, siblings can learn and grow in many ways. There are many positive character traits that siblings often possess.

Compassion

Helpfulness

Accepting of differences

Supportive

Kindness

Dependable

Empathetic

Insightful

Strong coping skills

Interested in health and well being

Strong appreciation for family and togetherness

Resilient

Some of the Challenges Experienced by PANS/PANDAS Siblings

Siblings Have Their Own Set of Special Needs
Siblings often hold a lot in which can take a significant toll over time. It is tough to juggle the needs of all children in the household as it is, but this is especially true when you are in crisis mode. Unfortunately, there are not many programs available to support siblings of those with mental health issues, unlike with cancer. So parents find themselves in positions in which they have to do their best to cobble essential supports together.

Attention Shifts to the Child with PANS/PANDAS.
The sibling with PANS/PANDAS will get a significant share of attention. During a flare, whether it is the first or the tenth, the focus is on the child with PANS/PANDAS. Because of the nature of PANS/PANDAS, this shift in attention typically happens rapidly. Focus often remains on the child with PANS/PANDAS between flares. Depending on the age of the sibling, they might not fully understand why parents are not giving them as much attention as they don't really understand the disease. This shift in attention can lead to resentment, especially if this happens over an extended period.

A Burdensome Sense of Responsibility
Many siblings have to grow up pretty fast. They may have to help their parents care for the one with PANS/PANDAS. Or they are unwittingly tasked with having to care for the younger siblings or doing more of the household care. Emotional stress causes children to have to think about things that most children do not encounter until later in life.

Feelings of Perfectionism (and the opposite) and Inadequacy
Some siblings may feel a need to overcompensate for their sibling's issues. Thus, they feel the need to be perfect, so their parents do not have to worry about them; mistakes would only add to their parents' stress. Also, some siblings strive for perfection so they can get some attention too. Perfection is impossible to achieve, and not reaching it can lead to feelings of inadequacy and increased stress. The opposite can also happen. Some children will act out to gain attention. Some children also do not apply themselves to their full potential because they feel a sense of hopelessness.

Feelings Are Often Invalidated, Not Addressed
Siblings often are hesitant to be open about their feelings regarding how PANS/PANDAS has affected their lives too. It is crucial to allow siblings to express all of their feelings about their sibling and PANS/PANDAS. Not all the emotions they will express are positive. They should not be shamed for having these feelings. Often their thoughts contradict each other, which further adds to the confusion about their feelings and the situation.

Common complicated feelings a sibling may have

Scared/Worried about their sibling's safety, well-being, future

Guilty for not having PANS/PANDAS (survivor's guilt)

Worry that they will eventually get PANS/PANDAS too

Jealous of the attention the sibling receives

Desire to be perfect

Embarrassment about their sibling's behaviors

Stress and pressure to do more

Invalidated when their feelings are rejected

Angry about all the things PANS/PANDAS has brought into their life

Resentful because life is not "normal"

All emotions are valid. Siblings need space to speak freely

Often siblings, feel they can't say anything negative about their sibling or the disorder. However, they need to be able to have a safe space with their parents to do so. Their feelings need to be validated and heard. Typically siblings complain about each other and have disagreements; it is crucial to allow typical sibling behavior to occur. Some kids are going to feel sad, and others feel stressed, isolated, resentful, and even angry. These feelings are okay as long as we address some of these feelings and provide tools to help them cope and do what we can to improve the situation.

Even non-life threatening problems matter too

Siblings often feel their issues are less significant or other people make them feel that way. Complex medical concerns, like seen in PANS/PANDAS, are clearly substantial, but so are day to day struggles of growing up whether they be with friends, school, or extracurricular activities. Do not minimize the sibling's struggles just because they are not life or death issues. Powering through and being resilient about every problem a sibling faces could lead to more significant mental health and well-being issues.

Breeds feelings of isolation and embarrassment

Growing up, one often feels like they are the only ones experiencing a particular situation or emotion. Even though there are so many children with special needs, often siblings don't have a friend who truly understands what it is like in their world. Also, siblings often feel embarrassed by the behaviors and symptoms exhibited by the sibling with PANS/PANDAS. Children don't necessarily have the tools to explain their sibling's actions and symptoms. Siblings often don't want their friends to come over to their house. All of this can lead to a feeling of isolation.

Four Key Areas of Support:

Be Consistent - PANS PANDAS can disrupt the family's schedule in a blink of an eye. So, as best you can maintain familiar routines.

Connect - We won't always get to devote as much time to the siblings as before, especially during a flare, so be creative about ways to keep a solid connection between you and the siblings. Put notes in their lunch bag, set aside one-on-one time even if only for short periods, etc.

Communicate - Since schedules have changed and we are not always sure what comes next, do your best to communicate with siblings about changes to the schedule so they are left wondering for too long. Also, encourage siblings to talk to you about all their questions and concerns.

Educate - Explain what PANS PANDAS is and how it will affect the household in an age-appropriate way. There are some PANS PANDAS books written for kids that can help you with this.

Ten Ways to Support Siblings within the Four Key Areas

Explain PANS/PANDAS in an age-appropriate way

Provide information. Explain PANS PANDAS in an easy-to-understand way.

It may be helpful to focus on explaining the strengths and weaknesses of the sibling with PANS/PANDAS, so it is understood that not all behaviors are choice-based.

Explain why all the doctor appointments and medical interventions are needed.

Talk openly about emotions and accept them

Ask them how they feel. Encourage siblings to share their emotions even if they are challenging to hear.

Let siblings know they are heard, understood, and respected.

Provide avenues of support to siblings who are having difficulty beyond what you can handle as a family. Therapy and sibling groups can be helpful.

Schedule time for the sibling

This might not be as possible as you like during a flare. Do your best, especially when not in crisis mode.

This is going to look different from family to family and sibling to sibling.

The actual amount of time spent might not be equal, but it should be done consistently and with as much undivided attention as possible. Ten minutes can be meaningful!

Be realistic about your time; don't over-promise how much time you can dedicate to the sibling. They still may resent you spending less time with them, but at least they are not further disappointed by promises not kept.

Schedule time for activities other than PANS/PANDAS
Do not talk about PANS/PANDAS constantly. Practice not bringing it up to anyone, even the patient, for an entire day (or longer). PANS/PANDAS should not be the constant chatter in the foreground or background of your family's whole life.

Be consistent with consequences as appropriate

Being consistent with consequences can be tricky to do when some PANS/PANDAS behaviors are a manifestation of the disorder, not always choice-based. This is why referring back to point #1- Explaining PANS/PANDAS is so crucial. So you can help explain why consequences are not always equal.

When appropriate, consequences should be consistent between the child with PANS/PANDAS and the sibling.

Highlight the positives
The positives of living with PANS/PANDAS can be hard to come by. But it can be helpful to highlight things you and the siblings have learned from the experience. For example, learning resiliency, becoming more empathetic, being more patient, etc.

Build-in supports for the sibling

Be conscientious regarding the sibling's mental health by being aware of signs of depression. Know what is happening at school and with friends.

For many people, there is still a stigma against seeking professional help, so it is vital to be proactive by having open conversations about mental health and the possibility of seeking therapy. A sibling might not need therapy to help cope with the unique needs of having a sibling with special needs, but they should feel comfortable trying it if they do need it.

It is vital to model self-care. If the sibling sees the parents/caregivers taking care of themselves both physically and emotionally, they will have an easier time doing it for themselves. And remember, self-care is not about pampering; it is about being supportive of one's own essential needs.

Provide encouragement, praise, and support

Sometimes we focus on the PANS/PANDAS patients' successes, so make sure you highlight the sibling's achievements too, even if they may seem like normal, everyday tasks for them.

Encourage things the sibling is most proud of. Give them their moment to shine. Show them you value their efforts and applaud their achievements.

Stop rushing and re-prioritize
You are pulled in every direction all day every day as a parent. Pare down that to-do list and then pare it down again. Relieve yourself from the stress of over-scheduling your life. Do this for your children too. They do not need to do every single extracurricular activity offered to them. Kids usually know what activities they like the most. Teaching them to be selective with their time will be a benefit throughout life. This could also reduce the overstimulation of your child with PANS/PANDAS.

Say thank you

Don't take all the sibling does for granted. Appreciating and acknowledging them goes a long way.

Thank them for being a great sibling, being loving, loyal, kind, and patient, etc. Thank them for helping more around the house.

Therapy For Siblings
Return to section:
Behavioral Health

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We know there is no parenting playbook; there certainly isn't one when you add PANS/PANDAS to the mix. As parents, we are often second-guessing our decisions. So, as you read this section on supporting siblings of PANS/PANDAS patients, remember, every household, sibling, and PANS/PANDAS patient is unique.

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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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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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Provides a comprehensive overview of the conditions including the impact on education.

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Provides a comprehensive overview of the conditions including the impact on education.

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Long Covid and PANS

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In previous Twinkl Digest articles, we have shared information about a range of hidden disabilities and explored what educators can do to support children and young people. In today's article we look at a new and concerning condition - Long COVID.

Earlier this week, Long Covid Kids released some staggering data claiming there has been a ' 30% increase in the number of children suffering Long Covid in one month'. While the Office for National Statistics (ONS) are also tracking the prevalence of Long Covid, they are not currently exploring the impact on children and young people. What do educators need to know about Long Covid so they can support children and young people who develop the condition?

This article will look at:

What is Long COVID?

What does the most recent research say?

What do educators need to know?

What is Long COVID?

Long COVID terminology:

Long COVID is a term used by the general public to describe the ongoing, fluctuating symptoms of COVID-19.

The World Health Organization (WHO) refers to Long COVID as Post COVID-19.

In October, WHO released the following definition:

'Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis'.

This definition goes on to say that 'symptoms may also fluctuate or relapse over time' and that a 'separate definition may be applicable for children' although this is not expanded upon.

In the UK, The National Institute for Health and Clinical Excellence (NICE) splits Long COVID into two separate conditions; Ongoing symptomatic COVID-19 and Post-COVID-19 syndrome.
Ongoing symptomatic COVID-19
Persistent signs and symptoms of COVID-19 from 4 to 12 weeks
Post-COVID-19 syndrome
Persistent signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.

According to the NHS website, common symptoms of Long COVID include:

Extreme tiredness (fatigue)

Shortness of breath

Chest pain or tightness

Problems with memory and concentration ("brain fog")

Difficulty sleeping (insomnia)

Heart palpitations

Dizziness

Pins and needles

Joint pain

Depression and anxiety

Tinnitus, earaches

Feeling sick, diarrhoea, stomach aches, loss of appetite

A high temperature, cough, headaches, sore throat, changes to sense of smell or taste

Rashes

What does the most recent research say?

Research into Long COVID will continue. An article released in the Paediatric Infectious Diseases Journal looks at how common Long COVID is in children and adolescents, here is a snippet of their findings: (1)

Despite the low-risk that acute COVID poses in children in the short term, two longer term consequences of SARS-CoV-2 infection are of more concern

Paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS)

Long COVID or post-COVID syndrome

Over 200 symptoms have been attributed to long COVID, many of them nonspecific and highly prevalent in the general population, such as fatigue, sleep disturbance, concentration difficulties, loss of appetite, and muscle or joint pain

There is much less data on long COVID in children and adolescents

We spoke to PANS PANDAS UK for a previous article which explored Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and touched on the possible links to Long COVID.

PANS PANDAS UK have commented further on Long COVID, briefly outlining the symptoms reported in adults and children who have contracted a COVID-19 infection. These symptoms may impact on an individual's ability to successfully access their education.

Links to the research mentioned are available at the bottom of the article.

'Children hospitalized with severe cases of COVID-19 can display a range of serious neurological symptoms (i.e. driven by changes occurring in the brain and associated nervous system). These can include encephalopathy (e.g. memory and concentration loss), neuromyopathy (e.g. muscle weakness, spasms), behavioural changes and hallucinations.(2-4) Long term recovery outcomes of children severely affected by COVID-19 are not yet known. Educationally, hospitalised children who have suffered a brain injury (which is distinct from Long COVID) will have been clearly identified with a diagnosed medical need for support and should accordingly have robust EHCPs in place as required.

However, with evidence reported that adults who have contracted less serious cases of COVID being more likely to suffer from mobility problems, pain or discomfort, fatigue, muscle weakness, palpitations, new onset neuropsychiatric conditions (such as confusion, depressed mood, anxiety, impaired memory, and insomnia), cognitive problems (such as attention, emotional, motivational and behavioural symptoms) as well as cognitive deficits (5-8) - it must not be discounted that children suffering with Long COVID are also going to experience such symptoms and that these will impact their education. However, much more research is needed in this regard.

Children suffering from Long COVID may not be clearly identified, particularly if they experienced an asymptomatic COVID-19 infection and no medical testing for evidence of COVID-19 infection was performed. The new onset of, or exacerbation of previous, behavioural or mental health conditions could then very easily be incorrectly diagnosed as not relating to a COVID-19 infection. With close similarities between Long COVID and PANS, the lessons learned from working with children with PANS is that SEN support will be required in educational settings and that, without appropriate medical treatment for these children, significant long term SEN support may be required.'
We thank Dr Sarah Hughes PhD for contributing to this article on behalf of PANS PANDAS UK
What do educators need to know?

This one is tricky. Due to the lack of research and (more crucially) answers, there is currently no specific advice for teachers about supporting children and young people who have long COVID. That said, as educators we understand the importance of individual support for children and the complexities of working out what children need to be able to thrive. Long COVID should be approached with the same level of expertise as any other special educational need or disability. With compassion, communication and adaptations.

As mentioned above, '...the lessons learned from working with children with PANS is that SEN support will be required in educational settings and that, without appropriate medical treatment for these children, significant long term SEN support may be required.' Long COVID appears to share symptoms, and therefore methods of support, with a number of other hidden disabilities.

Things to keep in mind:

It may be necessary to allow more time to complete tasks, cognitive function may be impaired

Allowing frequent breaks gives the individual time to process information and rest

If a child with Long COVID (diagnosed or not) expresses that they are tired, allow them to stop

If a period of online learning is needed, it should be put in place

Communication with parents is vital to establish a holistic view of the child's daily life

Any concerns regarding a young person's health should be referred to parents and medical professionals

These Twinkl Digest articles are all part of our 'Hidden Disabilities' series. Find the rest of the series here:
Hidden disabilities: Paediatric Acute-onset Neuropsychiatric Syndrome Hidden disabilities: ME/CFS - Sajid Javid says 'we need to do more' Hidden disabilities: Hypermobility syndromes including HSD and EDS
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.

References

1. Zimmermann P, Pittet LF, Curtis N. How Common is Long COVID in Children and Adolescents? The Pediatric Infectious Disease Journal: 2021; 40(12): 482-487 doi: 10.1097/INF.0000000000003328

2. Ray STJ, Abdel-Mannan O, Sa M, et al. Neurological manifestations of SARS-CoV-2 infection in hospitalised children and adolescents in the UK: a prospective national cohort study. The Lancet Child & Adolescent Health. 2021;5(9):631-641. doi:10.1016/S2352-4642(21)00193-0

3. Sa M, Mirza L, Carter M, et al. Systemic Inflammation Is Associated With Neurologic Involvement in Pediatric Inflammatory Multisystem Syndrome Associated With SARS-CoV-2. Neurol Neuroimmunol Neuroinflamm. Jul 2021;8(4). doi:10.1212/nxi.0000000000000999

4. LaRovere KL, Riggs BJ, Poussaint TY, et al. Neurologic Involvement in Children and Adolescents Hospitalized in the United States for COVID-19 or Multisystem Inflammatory Syndrome. JAMA Neurol. May 1 2021;78(5):536-547. doi:10.1001/jamaneurol.2021.0504

5. Huang L, Yao Q, Gu X, et al. 1-year outcomes in hospital survivors with COVID-19: a longitudinal cohort study. The Lancet. 2021;398(10302):747-758. doi:10.1016/S0140-6736(21)01755-4

6. Kumar S, Veldhuis A, Malhotra T. Neuropsychiatric and Cognitive Sequelae of COVID-19. Frontiers in Psychology. 2021;12:553. doi.org/10.3389/fpsyg.2021.577529

7. Ali Awan H, Najmuddin Diwan M, Aamir A, et al. SARS-CoV-2 and the Brain: What Do We Know about the Causality of 'Cognitive COVID? Journal of Clinical Medicine. 2021;10(15) doi:10.3390/jcm10153441

8. Rogers JP, Watson CJ, Badenoch J, et al. Neurology and neuropsychiatry of COVID-19: a systematic review and meta-analysis of the early literature reveals frequent CNS manifestations and key emerging narratives. Journal of Neurology, Neurosurgery & Psychiatry. 2021;92(9):932. doi:10.1136/jnnp-2021-326405

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Supporting children and young people who have Long COVID - Twinkl Blog

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A wide range of academic and scientific research is now being undertaken to understand the potential impact of Long COVID on children and young people. Twinkl Digest explores the research to find the information educators need to enable them to support children and young people who have Long COVID.

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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:

Anxiety (particularly separation anxiety)

Emotional lability or depression

Irritability

Aggression, and/or severely oppositional behaviors

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

Sensory or motor abnormalities

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:

Prescence of OCD and/or Tics

Pre-pubertal onset

Acute onset of symptoms with an episodic pattern

Association with a neurological abnormality

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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https://drive.google.com/file/d/1VtL-ezSDlF_Z1KD2_MA5GTe6VoWpPLG0/view

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https://www.sibs.org.uk/about-sibs/sibs-services/

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https://www.pandasppn.org/pandas-pans-vs-traditional-ocd/?fbclid=IwAR3-1JFXjlKV_jCpRWMgiGBCRBH04doz2Lr5Ps_k6howBhNZi0vfvhvuSdU

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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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In rare cases, some children may experience the sudden onset of Obsessive-Compulsive Disorder or eating disorders. This pediatric acute-onset neuropsychiatric syndrome is commonly called PANS. PANDAS is a subtype of PANS with a specific known cause, exposure to a strep infection. While PANS/PANDAS occurs mostly in children who do not also have Autism Spectrum Disorder, in rare cases, a child may have both conditions. Recognizing and diagnosing PANS/PANDAS in a child with ASD can be especially challenging because many of the symptoms overlap.

Signs and Symptoms of PANS/PANDAS

Between 1 and 3% of youths have OCD. Among children with OCD, may meet the criteria for PANS/PANDAS. While as many as 17% of children with autism also have OCD, it is very rare that their OCD is linked to PANDAS. Even so, the situation can arise. When it does, it can be difficult to separate the symptoms of autism from signs of PANS/PANDAs since many of the symptoms and comorbidities overlap.

While PANS is a group of symptoms without an undetermined cause, PANDAS does have a clear trigger. In most cases, the onset of PANDAS is triggered by exposure to Group A Streptococci, commonly known as strep throat or a strep infection. Other microbes, including Lyme and Mycoplasma, may also be related to PANDAS. When a child with genetic susceptibility (2-5% of the population) is exposed to these microbes, it causes a misdirected immune response, which leads to brain inflammation. This can manifest as PANDAS.

PANS/PANDAS is marked by the abrupt onset of OCD or Anorexia. With the concurrent onset of at least two of seven signs:

Behavioral developmental regression

Emotional liability or depression

Irritability aggression or severally oppositional behavior

Deterioration in school performance

Sensory or motor abnormalities

Somatic signs/symptoms, especially insomnia and urinary symptoms

PANDAS is essentially a form of autoimmune encephalitis, a complex set of brain disorders, characterized by autoimmune induced neuroinflammation. It is diagnosed only when symptoms are not better explained by other neurologic or medical disorders such as Sydenham's chorea or Tourette Syndrome .

Who gets PANS/PANDAS?

By definition, PANS/PANDAS affects children. While it may be diagnosed in children between the ages of 3 and 12, the average age of onset is between 7 and 8 years old. It is most common in children between Kindergarten and second grade.

PANS/PANDAS seems to affect all socio-demographic groups equally. However, researchers have noticed increased rates of these conditions in families with a history of acute rheumatic fever or OCD. For a more in-depth look into the history and impacts of PANDAS, view the webinar Research Updates - PANS/PANDAS by Dr. Susan Swedo, who led the NIMH team that was first to identify this new subtype of pediatric OCD.

Dr. Swedo describes comorbidities as a rule, rather than the exception, in children with PANDAS. Common Comorbidities include:

Sleep disorders (80%)

Behavioral regression (98%)

Inability to concentrate (90%)

Handwriting deterioration (90%)

Urinary frequency, urgency, enuresis (90%)

Only about 10% have hallucinations, and about 20% have eating disorders. More common comorbidities include short-term memory loss, hyperactivity, aggressiveness, learning difficulties, and sensory hypersensitivity.

How PANS/PANDAS is diagnosed

Diagnosis of PANS/PANDAS is based on the consensus statement from the PANS Consensus Conference , published in the Journal of Child and Adolescent Psychopharmacology in 2015. PANS/PANDAS requires a differential diagnosis, meaning that the symptoms cannot be better caused by another known medical or neurological disorder. Other diagnoses might include:

Before diagnosing PANDAS, a physician may order laboratory testing, EEG and MRI scans, or a sleep study. They will likely take a comprehensive family history (paying special attention to genetic factors and exposure to strep), perform a physical examination, and look for involuntary movements and dilation of the pupils. If the onset is recent, the clinician may also take a throat culture to identify the presence of a strep infection. Remember that PANDAS can only be diagnosed if the symptoms cannot be explained by another disorder. Clinicians should seek to rule out other illnesses first.

How is it treated

Clinicians generally take a three-prong approach to treating PANDAS:

1. Treating and preventing infections: If the child has a bacterial infection, treating this infection can reduce symptoms and improve outcomes, especially during the first weeks or months of illness. In this case, a physician may prescribe 3 to 4 weeks of narrow-spectrum antibiotics.

2. Addressing immune system dysfunction: Immunomodulatory therapies to address immune system dysfunction may include NSAID's Oral or IV steroids, intravenous immunoglobulin (IVIG), therapeutic plasmapheresis, and others indicated by severity. These are only useful in conjunction with infection treatment and psychiatric and behavioral interventions.

If a child has OCD but does not have PANS/PANDAS, there is no reason to pursue a long-term immune treatment. In a study by Nicolson et al, JAACAP 2000, children with OCD but without PANS/PANDAS saw no significant improvement from therapeutic plasma exchange. These therapies are expensive and intensive. Other studies have shown similar results.

3. Applying Behavioral and Psychiatric Interventions: Behavioral and psychiatric Interventions may include SSRI's Anxiolytics, Soporifics, other typical psychiatric medications, and cognitive behavior therapy. When choosing a therapist, Dr. Swedo suggests looking for an expert in OCD treatment:

"If I had my choice between a therapist who had a lot of experience treating children or one who had a lot of experience treating OCD in adults, I would actually go for the treatment of OCD in adults because treatment of OCD in children is identical to that has been found to be effective for adult patients with obsessive-compulsive disorder," she said.

Supportive therapy can help parents understand the course of illness and treatment. Getting parents into CBT even before the child is ready can be very helpful.

Treatments should be administered by a licensed and qualified healthcare provider. If you suspect your child may have PANS or PANDAS, consult your primary care physician.

In very rare cases, a child with autism may also qualify for a diagnosis of PANS/PANDAS. For a deeper look at the latest PANS/PANDAS research, view the webinar presented by Susan Swedo, M.D.
ARI thanks Sue Swedo, MD, for her contributions to this article.

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The information below is from the 2019 ARI webinar, PANS/PANDAS - Research Updates In rare cases, some children may experience the sudden onset of Obsessive-Compulsive Disorder or eating disorders. This pediatric acute-onset neuropsychiatric syndrome is commonly called PANS. PANDAS is a subtype of PANS with a specific known cause, exposure

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Have you heard of EMDR as a therapy option for your PANS child or teen? Or you may be wondering what in the world is EMDR and how can it help those with PANS? Either way, this post is for you.

What is EMDR?

EMDR stands for Eye Movement Desensitization and Reprocessing. In a nutshell, EMDR helps to reduce disturbing thoughts, feelings or images. ⁣⁠

EMDR uses "bilateral stimulation". Bilateral stimulation can be in the form of right to left eye movements, sound that alternates from left ear to right ear, or touch that alternates from right side to left side.

When reprocessing disturbing material, bilateral stimulation is paired with specific steps of talking about the disturbing memories or thoughts, including intrusive thoughts, OCD thoughts and anxiety thoughts. Over time, participants report a reduction or complete absence of disturbance to the upsetting material.⁣

Who can benefit from EMDR?

EMDR was originally used for PTSD, but it has also been shown to be helpful for anxiety, depression, OCD and phobias.

Currently, there seems to be only one published study on using EMDR with PANS kids. You can read it here. ⁣⁠In this study, you'll find that an 11 year old PANDAS patient showed a reduction in tics and OCD behaviors after eight EMDR therapy sessions combined with parent management training.

EMDR as a Therapy Option for PANS Children

Since there has been little published research on using EMDR with PANS children, I consider many factors before beginning EMDR therapy with a client. First, I make sure I have clearance with their treating doctor, and second, I work with a PANS child or teen on the "stabilization and resourcing" aspect of EMDR until they are very well stabilized. ⁣⁠

During stabilization and resourcing, I teach the PANS child how to create a "safe place" to "go to" when they feel stressed or overwhelmed, and how to create a "container" such as a jar or box to put the disturbing thoughts or feelings into. When we pair their "safe place" with bilateral stimulation, PANS kids can increase a "felt sense of safety" with their safe place . ⁣⁠

I find a lot of the PANS kids do best with audio bilateral stimulation when on telehealth sessions or with tactile buzzers for bilateral touch stimulation in the office. In my experience, I have found EMDR to be an excellent tool to have available for PANS kids and teens.⁠

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Have you heard of EMDR as a therapy option for your PANS child or teen? Or you may be wondering what in the world is EMDR and how can it help those with PANS? Either way, this post is for you. EMDR stands for Eye Movement Desensitization and Reprocessing.

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Foundation for Children with Neuroimmune Disorders

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Alberto Spalice, MD, PhD

Department of Maternal Sciences
Child Neurology Division
University La Sapienza Roma Italy

Cristiana Alessia Guido, Psy D

Department of Maternal Sciences
Child Neurology Division
University La Sapienza Roma Italy

PANS and PANDAS: An Interview on EMDR in PANDAS

Thank you to Dr. Alberto Spalice and Dr. Christiana Alessia Guido for allowing Foundation For Children With Neuroimmune Disorders Board Chair and founder, Anna Conkey to interview her. Their full paper, Eye movement desensitization and reprocessing (EMDR) treatment associated with parent management training (PMT) for the acute symptoms in a patient with PANDAS syndrome: a case report is here.

Thank you so much for taking the time to talk to us about the use of EMDR in PANDAS. You published a case study in 2019. Can you give us an overview of the case and what you found?

The case concerned an 11-year-old boy who was diagnosed with PANDAS/PANS. The syndrome was characterized by the presence of elevated Antistreptococcal and antiDNAse titers, associated with acute onset of simple and complex motor tics, oral tics, obsessions and compulsions (fear of contamination, aggressive behaviour, superstitions, repetitive compulsions, religious compulsions, etc.), irritability and anxiety. A deterioration in writing (micrographia) was also observed.

The boy suffered from recurrent familial streptococcal infection; moreover celiac disease was also diagnosed. He had been prescribed courses of antibiotic therapy and penicillin which reduced the symptoms, however, in periods of severe stress, the tics, irritability and compulsions were exacerbated.
Investigating the environmental factors, from the anamnestic interview emerged that the patient's father suffered from OCD and tics during childhood, while his mother suffered from thyroid cancer, Hashimoto's thyroiditis and depression. Moreover, after PANDAS' diagnosis the parents feared that the child might get worse to the point of generate in them an environmental hyper-control which translated into hyper-cure in medicalization with rigid impositions and consequent punishments. This important change had reduced the boy's quality of life by inserting him in a series of adverse experiences without the possibility of expressing the emotions that had generated anger and sense of helplessness and ineffectiveness in him. Through the work with EDMR the boy showed great improvement in motor and vocal tics after treatment, as well as a marked reduction of obsessions and compulsions.

Will you describe for those unfamiliar with EMDR how the process works?

The Eye Movement Desensitization- EMDR, is based on the Adaptive Information Processing model - AIP (Shapiro, 1955), according to which the experiences processed are the basis of mental health. Unresolved trauma or loss, caused by recurrent, difficult and emotionally important childhood experiences, can inhibit the normal processing of memories by interfering with the recording and storage mechanisms of autobiographical memory. Information linked to traumatic or stressful experiences is not always fully processed, so the initial perceptions of the event and the biochemical responses elicited by it (adrenaline, cortisol, etc.) would block the brain's innate information processing system, leaving isolated in a neurobiological stasis the information linked to the trauma. This information would remain trapped in the neural network along with the emotions, negative self-beliefs and physical sensations that existed at the time of the event. Traumatic memories therefore cause an interruption of the normal adaptive processing of information that is not processed and remains blocked in a dysfunctional way in the memory networks.

Some research has shown that EMDR favors the transition from activation from limbic regions (seat of emotions) to cortical regions (Pagani, 2012), so through a process of desensitization towards memory and cognitive modification of personal patterns, during the EMDR session, the patient distances himself from the memory and modifies the negative beliefs about himself by incorporating adequate emotions and eliminating the disturbing physical sensations.
EMDR is an integrative therapeutic approach divided into 8 phases. It starts with the conceptualization of the case and the identification of the target, that is past event that acts as a trigger for the patient's current disorder. Emotions, negative cognitions and bodily sensations related to memory are then traced (History taking and Preparation). Through various steps (Assessment and Desensitization) in which the therapist facilitates the processing of the patient's memory through bilateral ocular stimulation (BLS), participating in the session without interfering with the process of processing the patient's memory, the process of adaptive information processing is it concludes with the installation of new positive self-knowledge (Installation) and monitoring of any symptoms of discomfort related to the original memory still present in the patient (Body Scan, Closure and Reassessment).

In the case you described, there was a history of trauma. Was the EMDR therapy focused solely on resolving this traumatic experience and if so, was trauma the trigger of the PANDAS symptoms?

In the case we discussed, the trauma was not the trigger of the PANDAS symptoms, but in contrast, the onset of Pandas was a traumatic event for both the boy and his family. EMDR therapy was used with the dual objective of treating both the change generated with the onset of the disease as a traumatic event and the attachment relationship between child and parent which presented some problematic aspects from early childhood. These aspects were further compromised with the onset of the disease. According to this perspective, we can therefore say that the symptoms related to the syndrome (irritability, obsessive-compulsive traits, sense of inadequacy and helplessness), were amplified by the negative cognitions that the boy had developed about himself as an effect of the dysfunctional relationship with the father. For this reason, the EMDR treatment was accompanied by sitting parent training aimed at the boy's parents, showing high efficacy in reducing symptoms. A factor that favored the resolution of the problem was in fact constituted by the reduction of the relational conflict between father and son and the acquisition of more mature strategies in the parents to deal with the sudden behavioral changes of the boy. Through parent training, parents have reduced over-control over the child and modified symptom containment strategies. Through Emdr the boy installed new positive knowledge about himself and new resources that led to more effective coping strategies.

Does EMDR therapy have a possible application in PANDAS where there is no history of trauma?

EMDR can be considered by therapists as a useful tool to use in situations where observable symptoms are the product of negative experiences that disorganize the person's neurobiological system and impact on his identity by involving his emotions, beliefs and feelings. Therefore, the assessment phase with the patient is a very important moment for planning the therapeutic treatment deemed most suitable for the individual case.

In the case presented, as described above, the dysfunctional management of the boy's pathology by the family members did not favor the containment of symptoms by subjecting the patient to negative experiences that exacerbated a relational conflict already present from childhood.

Instead, where a less complex situation arises, the scientific community has shown that Cognitive-Behavioural Therapy - CBT, represents the most effective treatment for Pandas / Pans (Swedo SE, Frankovich J, Murphy TK. Overview of treatment of pediatric acute-onset neuropsychiatric syndrome. J Child Adolesc Psychopharmacol. 2017; Sep;27(7):562-5.) The clinician must therefore identify, according to his experience, the most appropriate treatment methodology.

In what ways can EMDR therapy help with OCD, intrusive thoughts, repetitive loops, etc?

EMDR should be used when the patient with OCD does not respond to standard treatment with CBT (exposure with prevention of response - ERP). According to some authors, traumatic life experiences may be the explanation for the development of acute and chronic OCD, as something comes from 82% of therapy-incident patients have experienced trauma and 50% meet the criteria for post-traumatic stress disorder (PTSD; Gershuny, Baer, ​​Parker, Gentes, Infield and Jenike 2007). Research shows that to achieve optimal progress in OCD treatment, use an integrated approach traetment (ERP Therapy and EMDR) both desensitization in vivo and past events associated with OCD (Luber 2017). Through the EMDR the patient takes the attention that the disorder / symptom is a way of coping, of managing stress. The work on the events that make up the history of the disorder and on the triggers, together with the installation of new coping strategies (protocol of the future) leads the patient to face the trigger situations (CRSP, Fernandez 2016).

Can EMDR help resolve rage, anxiety, or other troublesome symptoms?

There are specific protocols for the treatment of various problems including anxiety and mood disorders. In general, EMDR working on events related to the onset of the symptom favors its reduction or extinction.

It has been about a year since you published the case study. Can I ask how this young man is doing today and if his gains from EMDR therapy have stuck?

The boy was monitored over time through interviews with his parents. Since the end of EMDR therapy, parents have observed periods of increased irritability and the presence of mild tics in the child that have never reached acute stages. The periods indicated correspond to changes in the boy's routines (return to school, interruptions of some activities) or with requests for results from outside (music or school exams). In the rest of the time the symptoms were not present. Parents also have access to having reduced the overcontrol on the child who was exercised with the imposition of rigid rules and also administered with an excess of medical visits or drugs. The same have in fact understood the psychological aspect can determine the exacerbation or the reduction of the symptoms therefore they have adopted more flexible behavioral strategies giving more autonomy to the child.

The boy also definitively stopped penicillin therapy which he had also used for years for prevention purposes.

Thank you so much for your time Dr. Spalice and Dr. Guido. This was really interesting.

PANS/PANDAS parents, please consider joining us for a free webinar October 30, 2020 with therapist Ruth Setlak who has expertise using EMDR in patients with PANS.

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EMDR in PANS/PANDAS with Dr. Spalice & Dr. Guido | Neuroimmune

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Department of Maternal Sciences Child Neurology Division University La Sapienza Roma Italy Department of Maternal Sciences Child Neurology Division University La Sapienza Roma Italy Thank you to Dr. Alberto Spalice and Dr. Christiana Alessia Guido for allowing Foundation For Children With Neuroimmune Disorders Board Chair and founder, Anna Conkey to interview her.

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Cognitive-behavioral therapy (CBT) with exposure and response prevention (ERP) can be an effective tool in the treatment of childhood-onset OCD, whether related to PANDAS or not. Current practice parameters recommend that clinicians begin with CBT for mild to moderate OCD presentations and only add medications for more severe presentations (Geller et al., 2012). (Please see: PPN Treatment Options: SSRIs) When working with children with PANS/PANDAS, CBT can be an important component of the overall treatment regimen (see below for treatment considerations). Treatment should involve parents (and other family members as appropriate) such that parents are taught the nature of the treatment and guided to serve as the child's at-home therapist. Typically, parents are included in each session to achieve this goal. Treatment may be intensive (i.e., daily) or once- or twice-weekly. The differential efficacy for youth with PANS/PANDAS has not been examined, but data suggest comparable effects in youth with OCD without PANDAS/PANS for patients with moderate OCD (Storch et al., 2007).

There are several reasons why CBT may be beneficial in working with families of a child with PANDAS/PANS. At symptom onset and thereafter, children and their family members often engage in behavioral patterns that maintain obsessive-compulsive/anxiety symptoms such as distress-reducing rituals, avoidance, and family accommodation. Such behaviors are negatively reinforcing and contribute to furthering learned associations between feared stimuli that may remain even after other effective therapeutic approaches. This may explain why some children who respond to immunomodulatory therapy continue to exhibit residual symptoms, as they have become learned behaviors. Thus, addressing these symptoms behaviorally may hold promise. Indeed, preliminary evidence by Drs. Storch and Murphy (Storch et al., 2006), as well as clinical experience, suggests that CBT holds promise in youth with PANDAS. In addition, the onset of PANDAS/PANS is a remarkably difficult experience that affects family functioning. Addition of CBT may provide children and family members with tools to effectively combat and/or contend with future exacerbations, should they occur.

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Cognitive-Behavioral Therapy for PANS/PANDAS | PPN

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Cognitive-behavioral therapy (CBT) with exposure and response prevention (ERP) can be an effective tool in the treatment of childhood-onset OCD, whether related to PANDAS or not. Current practice parameters recommend that clinicians begin with CBT for mild to moderate OCD presentations and only add medications for more severe presentations (Geller et al., 2012).

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US resource demonstrating the importance of early identification and treatment for impacted children. Schools have a crucial role in providing additional  information and observations at an early stage.

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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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Your generous donation will allow PANDAS Network to continue their dedication to improve the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).

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This book explores the experience of a young boy with 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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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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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.

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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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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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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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What is the relationship between PANS & PANDAS and Tourette's syndrome?

Susan Swedo, MD and Gabriella True sit down to discuss the relationship between PANS & PANDAS and Tourette's Syndrome. You can have a dual diagnosis of PANS/PANDAS and Tourette's Syndrome. Proper diagnosis is needed for appropriate treatment. If you see a doctor who will not even explore a PANS PANDAS diagnosis, please see a doctor who will carefully review your case to describe symptoms accurately and determine an accurate description of each symptom and diagnosis.

Gabriella True: What is the relationship between PANS & PANDAS and Tourette's syndrome?

Interesting question! Although we typically think of PANS & PANDAS and Tourette's syndrome as describing two different conditions, in reality, there is tremendous overlap, and patients may appropriately be given both diagnoses.

By now, we're all familiar with the relationship between obsessive-compulsive disorder (OCD) and PANS/PANDAS. OCD is the larger group and is defined by the presence of intrusive thoughts (obsessions) and/or unhelpful mental or behavioral rituals (compulsions) which interfere with functioning and occupy at least one hour each day. PANS is the term used to describe patients with an abrupt onset of OCD (or food/fluid intake restrictions) accompanied by at least two other types of symptoms (emotional, behavioral, cognitive, or physical difficulties). PANDAS is added to the diagnostic label if the acute-onset symptoms occur in a prepubertal child in the aftermath of a Group A streptococcal infection. Thus, a child might meet the criteria for all three diagnoses - OCD, PANS, and PANDAS.

The same is true for Tourette's syndrome and PANDAS. Tourette's syndrome is defined by the presence of at least one motor tic and at least one vocal tic for a year or longer. That definition gives a clue as to the arbitrariness of the diagnostic label - if a child has had an eye-blink tic and a throat clearing tic for 364 days, he has a tic disorder; if those same tics have been present for 366 days, he has Tourette's syndrome. If the tics started suddenly, all came on simultaneously and reached peak severity within 24 - 48 hours, the diagnosis of PANDAS might be applied if evidence of a preceding Group A streptococcal infection/exposure is found. In such cases, OCD and other neuropsychiatric symptoms may also be present. If so, the child may meet the criteria for PANS; if not, the diagnoses would be PANDAS and tic disorder. If the motor and vocal tics persist for at least a year, the diagnoses would be updated to PANDAS and Tourette disorder (the more proper term for Tourette's syndrome).

By now, you're probably thinking, "This is nuts! Why does one set of symptoms have to have so many different names?" Another great question! It would certainly make it easier for us to talk with one another if everyone could agree to use the same diagnostic label for the same set of conditions. However, in the case of PANDAS and Tourette disorder, the conditions are overlapping, not identical, so it's appropriate to clarify those differences by using different terms to describe the symptom sets.

In reality, most children with Tourette disorder have multiple diagnoses (just like those with PANDAS) because tics are a symptom of basal ganglia dysfunction. As we know, the basal ganglia act as one of the brain's "gatekeepers" - dysfunction in the basal ganglia not only results in motoric abnormalities, but also problems with attention and focus (ADHD), depression, anxiety, emotional regulation (Irritability, aggression, emotional lability), cognitive dysfunction, and difficulties with sleep, appetite and many others.

The bottom line is that the specific diagnosis assigned is less important than ensuring the child's symptoms are accurately described. For some children, a single diagnosis of Tourette disorder tells the whole story. For others, their diagnostic list might include not only Tourette disorder but also OCD, ADHD, separation anxiety disorder, and mild cognitive impairment. Each of these should be addressed separately and as a whole when developing a treatment plan. In addition, if the child's symptoms came on suddenly and reached peak severity within 24-48 hours, the diagnoses of PANS and PANDAS should also be considered.

Return to Sensory & Motor Abnormalities

Read Romy Worthington's Article Tourette & PANS Overlap

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Dr. Swedo on Relationship between PANS & PANDAS and Tourette's syndrome - Aspire

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What is the relationship between PANS & PANDAS and Tourette's syndrome? Susan Swedo, MD and Gabriella True sit down to discuss the relationship between PANS & PANDAS and Tourette's Syndrome. You can have a dual diagnosis of PANS/PANDAS and Tourette's Syndrome. Proper diagnosis is needed for appropriate treatment.