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Lego Animation Long Covid - Supporting together by Woody Woodhouse

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Youth Advocate Rosie met the Health Minister of Northern Ireland to discuss Long Covid Clinics

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On 23 January, LCK young advocate Rosie Pidgeon met the Northern Ireland (NI) Health Minister. He agreed to meet her to talk about her experience of NI’s Long Covid Clinics. See A Teenager’s Experience of a Long Covid Clinic in Northern IrelandThe Minister, Mike Nesbitt, invited her to his office in Stormont. In this photo, Rosie is waiting with her FFP3 mask, CO2 monitor and personal HEPA filter. When we contacted the Minister’s staff in advance, he agreed to meet Rosie in a room with open wind

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Long COVID Explained: The Ultimate Guide For Kids!

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Authors Suleman R. Sabir, Emma C. Thomson, Tomasz J. Guzik, Fulvio D’Acquisto, Pasquale Maffia

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Long COVID Explained: The Ultimate Guide For Kids!

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COVID-19 is caused by SARS-CoV-2, a virus that affects the upper and lower respiratory tracts. Most kids who get COVID-19 do not get sick at all, or only feel sick for a short time. But sometimes children who have had COVID-19 can feel unwell for several weeks or months after the infection. They continue to feel exhausted, have shortness of breath, and have trouble doing daily tasks. This is called long COVID, and doctors are trying to understand it and find ways to protect people. In this article, we will explain what can happen when kids get COVID-19, what long COVID is, and what might cause long COVID to happen in a number of infected people.

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Naomi got Covid at the start of the pandemic in March 2020.

Although she didn't feel too unwell at the time, the virus has continued to significantly impact her life.

The BBC Young Reporter Competition regional winner has share her story about living with Long Covid whilst being a teenager.
You can find stories by other young people on the BBC Young Reporter website.

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Naomi got Covid at the start of the pandemic in March 2020. Although she didn't feel too unwell at the time, the virus has continued to significantly impact her life. The BBC Young Reporter Competition regional winner has share her story about living with Long Covid whilst being a teenager.

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What's it like being a young person with long COVID? You might feel like a failure (but you're not)

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Imagine you're young, healthy and active. Then, one day, the rug is pulled out from under you. You initially have symptoms akin to a cold, so you take a lateral flow test, which shows you have COVID. But it's nothing that stops you from getting on with things, at least from a distance.
You can listen to more articles from The Conversation, narrated by Noa, here.
A few weeks later, or perhaps months, you start to have strange symptoms. You feel unwell after exercising, and you're exhausted after a trip to the shops or meeting a friend. Your chest becomes heavy when you load the dishwasher.

You go to the doctor and they run some tests. None come back with anything out of the ordinary. Your doctor tells you: "You might have long COVID, but we still don't know much about it."
This article is part of Fail Better, a series for those of us in our 20s and 30s about navigating the moments when things aren't quite going as planned. Many of us are tuned into the highlight reel of social media, where our peers share their successes in relationships, careers and family. When you feel like you're not measuring up, the pieces in this special Quarter Life series will help you learn how to cope with, and even grow from, failure.
Suddenly words like "rest" and "slowing down" become commonplace in your life. These words are not compatible with the life you want to lead, but your body gives you little choice. You feel shocked by this turn of events and you may even feel like a failure.

You're not, of course. But living with a chronic medical condition like long COVID, when only months ago you were fit and healthy, can mean you feel that way.

Young people and long COVID

Many might assume otherwise, but young, healthy people can develop long COVID. Data shows that 2.7% of people aged 17-24 and 3.6% of those aged 25-34 have symptoms at least four weeks after an infection. Even athletes are not immune.

Long COVID is still poorly understood, yet it can be life altering. Although symptoms and their severity vary from person to person, debilitating fatigue is common. Many sufferers are no longer able to do exercise, and even struggle with ordinary daily tasks.

People facing cognitive symptoms like problems with memory and concentration (" brain fog ") might see the quality and quantity of their output at work decline. This may be particularly worrying for young adults only just starting out in their careers.

Read more: Five tips for young people dealing with long COVID - from a GP

Long COVID can be episodic and unpredictable. Energy can fluctuate from week to week, day to day, and hour to hour. Physical, mental or emotional exertion can also exacerbate symptoms. Over time, you may feel you are gradually improving. But just as you think you're reaching the end, your symptoms can hit you hard again.

For people with long COVID, while improvement is possible, there's a degree of uncertainty about the course their illness might take. This can cast doubt over all sorts of plans a young person might have, from work, to study, to travel, to starting a family.

People with other chronic and poorly understood medical conditions, such as Lyme disease and ME/CFS ( myalgic encephalomyelitis/chronic fatigue syndrome), frequently struggle with feelings of identity loss. Research on people with long COVID is still emerging, but it's not difficult to see how it could lead to an identity crisis. The way a person saw themselves before getting sick - as a healthy and able-bodied professional, friend, partner, for example - is challenged when they're no longer able to carry out these roles like they once could.

Seeking support for an 'invisible' illness

Unfortunately, for people with "invisible" medical conditions like long COVID, seeking understanding from others can be fraught. Some may have their experiences discredited or dismissed as psychological by friends, family or even health professionals, which is sometimes called medical gaslighting.

This can be doubly so for people from certain groups, such as women and ethnic minorities, who are sadly at increased risk of having their experiences trivialised or discredited in a healthcare context.

In the face of all these challenges, it's important to have social support. Research shows that belonging to social groups and maintaining connections benefits our health and wellbeing.

Unfortunately, people with chronic conditions can face shrinking social circles. Others may not understand the reality of living with chronic ill health, and so are not flexible about regularly cancelled plans, for example. Feeling guilty for missing social events is yet another aspect of chronic illness that can take an emotional toll.

However, people with long COVID can develop new communities of others who understand what they're going through. These connections can help them rebuild their identity and adjust to their new normal. They can also help them face challenges in how their new health status is accepted at work by sharing experiences and resources.

For people living with long COVID, it's worthwhile seeking out supportive social networks. Online groups may be particularly beneficial when symptoms make it hard to travel.

Read more: Four ways to support a friend or loved one with long COVID

Even though there's much ground still to cover in long COVID research, the evidence is rapidly evolving and, with it, hopefully we'll see more enlightened attitudes and better treatments.

Our advice is to listen to your body and trust that you know its needs better than anyone else. Be your own best support, but at the same time, stay connected and seek out understanding people. If health professionals are unhelpful, remember you can seek second opinions and, in the meantime, pace yourself, rest and respect your body's limits.

Regressing after a period of good health may be particularly difficult. Know that it's normal to feel frustrated with the illness and with yourself, wondering if you're doing anything to trigger these symptoms. But try to be as compassionate with yourself as you can. It's not your fault, and long COVID does not make you a failure. Remember you're doing the best you can under the circumstances.
Quarter Life is a series about issues affecting those of us in our 20s and 30s.

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What's it like being a young person with long COVID? You might feel like a failure (but you're not)

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Imagine you're young, healthy and active. Then, one day, the rug is pulled out from under you. You initially have symptoms akin to a cold, so you take a lateral flow test, which shows you have COVID. But it's nothing that stops you from getting on with things, at least from a distance.

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LongCovidKids (@longcovidkids) TikTok | Watch LongCovidKids’s Newest TikTok Videos

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LongCovidKids (@longcovidkids) TikTok | Watch LongCovidKids’s Newest TikTok Videos

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LongCovidKids (@longcovidkids) on TikTok | 2.7K Likes. 107 Followers. Raising awareness. #LongCovid #LongCovidKids #Charity #PostCovidSyndrome

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Kids can get #longCOVID.

💬"You go through so many phases of up and down, it’s like being on a rollercoaster forever."

Kitty was a fit 14-year-old. She enjoyed ballet, paddleboarding, & running. Then she contracted #COVID19.

Read more👉 https://t.co/QFTwkN6kFy
@LongCovidKids

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Life as a young person with long COVID: “You go through so many phases of up and down, it’s like being on a rollercoaster forever”

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As young people across Europe go back to school, we speak to 16-year-old Kitty McFarland about the daily difficulties of living with post COVID-19 condition (also known as long COVID) and the steps schools can take to protect their students from its symptoms. In March 2020 Kitty McFarland was a fit and healthy 14-year-old. She enjoyed ballet, paddleboarding, running and netball. Then she contracted COVID-19. Kitty remembers experiencing only a cough and flu-like fever, but her mother Sammie, who became ill with COVID-19 at around the same time, mentioned a terrifying moment when her daughter became unresponsive. Fortunately, these severe symptoms subsided after a few days and her health appeared to improve. About a month later the pair attempted some very light exercise, but the relapse Kitty suffered left her bedbound for the next eight months.“I mainly felt dizzy and exhausted. I would faint a lot and get heart palpitations; I could be just sitting around, and my heart would suddenly

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Kids can get #longCOVID.

💬"You go through so many phases of up and down, it’s like being on a rollercoaster forever."

Kitty was a fit 14-year-old. She enjoyed ballet, paddleboarding, & running. Then she contracted #COVID19.

Read more👉 https://t.co/QFTwkN6kFy
@LongCovidKids https://t.co/xhBmQM96IJ

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Kids can get #longCOVID.

💬"You go through so many phases of up and down, it’s like being on a rollercoaster forever."

Kitty was a fit 14-year-old. She enjoyed ballet, paddleboarding, & running. Then she contracted #COVID19.

Read more👉 https://t.co/QFTwkN6kFy@LongCovidKids pic.twitter.com/xhBmQM96IJ
— WHO/Europe (@WHO_Europe) August 31, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
Kids can get #longCOVID.

💬"You go through so many phases of up and down, it’s like being on a rollercoaster forever."

Kitty was a fit 14-year-old. She enjoyed ballet, paddleboarding, & running. Then she contracted #COVID19.

Read more👉 https://t.co/QFTwkN6kFy
@LongCovidKids https://t.co/xhBmQM96IJ

# data[].attributes.attachment_link.metadata.attachment_props_source.data.entities.urls[].title
Life as a young person with long COVID: “You go through so many phases of up and down, it’s like being on a rollercoaster forever”

# data[].attributes.attachment_link.metadata.attachment_props_source.data.entities.urls[].description
As young people across Europe go back to school, we speak to 16-year-old Kitty McFarland about the daily difficulties of living with post COVID-19 condition (also known as long COVID) and the steps schools can take to protect their students from its symptoms. In March 2020 Kitty McFarland was a fit and healthy 14-year-old. She enjoyed ballet, paddleboarding, running and netball. Then she contracted COVID-19. Kitty remembers experiencing only a cough and flu-like fever, but her mother Sammie, who became ill with COVID-19 at around the same time, mentioned a terrifying moment when her daughter became unresponsive. Fortunately, these severe symptoms subsided after a few days and her health appeared to improve. About a month later the pair attempted some very light exercise, but the relapse Kitty suffered left her bedbound for the next eight months.“I mainly felt dizzy and exhausted. I would faint a lot and get heart palpitations; I could be just sitting around, and my heart would suddenly

# data[].attributes.attachment_link.metadata.attachment_props.original_text
Kids can get #longCOVID.

💬"You go through so many phases of up and down, it’s like being on a rollercoaster forever."

Kitty was a fit 14-year-old. She enjoyed ballet, paddleboarding, & running. Then she contracted #COVID19.

Read more👉 https://t.co/QFTwkN6kFy
@LongCovidKids https://t.co/xhBmQM96IJ

# data[].attributes.attachment_link.metadata.attachment_props.text
Kids can get #longCOVID.

💬"You go through so many phases of up and down, it’s like being on a rollercoaster forever."

Kitty was a fit 14-year-old. She enjoyed ballet, paddleboarding, & running. Then she contracted #COVID19.

Read more👉 https://t.co/QFTwkN6kFy
@LongCovidKids

# data[].attributes.attachment_link.metadata.attachment_props.entities.urls[].title
Life as a young person with long COVID: “You go through so many phases of up and down, it’s like being on a rollercoaster forever”

# data[].attributes.attachment_link.metadata.attachment_props.entities.urls[].description
As young people across Europe go back to school, we speak to 16-year-old Kitty McFarland about the daily difficulties of living with post COVID-19 condition (also known as long COVID) and the steps schools can take to protect their students from its symptoms. In March 2020 Kitty McFarland was a fit and healthy 14-year-old. She enjoyed ballet, paddleboarding, running and netball. Then she contracted COVID-19. Kitty remembers experiencing only a cough and flu-like fever, but her mother Sammie, who became ill with COVID-19 at around the same time, mentioned a terrifying moment when her daughter became unresponsive. Fortunately, these severe symptoms subsided after a few days and her health appeared to improve. About a month later the pair attempted some very light exercise, but the relapse Kitty suffered left her bedbound for the next eight months.“I mainly felt dizzy and exhausted. I would faint a lot and get heart palpitations; I could be just sitting around, and my heart would suddenly

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Life as a young person with long COVID: "You go through so many phases of up and down, it's like being on a rollercoaster forever"

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As young people across Europe go back to school, we speak to 16-year-old Kitty McFarland about the daily difficulties of living with post COVID-19 condition (also known as long COVID) and the steps schools can take to protect their students from its symptoms.

In March 2020 Kitty McFarland was a fit and healthy 14-year-old. She enjoyed ballet, paddleboarding, running and netball. Then she contracted COVID-19.

Kitty remembers experiencing only a cough and flu-like fever, but her mother Sammie, who became ill with COVID-19 at around the same time, mentioned a terrifying moment when her daughter became unresponsive. Fortunately, these severe symptoms subsided after a few days and her health appeared to improve. About a month later the pair attempted some very light exercise, but the relapse Kitty suffered left her bedbound for the next eight months.

"I mainly felt dizzy and exhausted. I would faint a lot and get heart palpitations; I could be just sitting around, and my heart would suddenly leap to 190 beats a minute," says Kitty. She also developed a gluten intolerance and acute abdominal pain that caused her to faint and required several hospital stays.

"Sometimes I needed help to eat all my food; at other times, I couldn't physically lift a glass because I was so weak, which is hard to admit when you were used to being strong and active," she recalls. Visual disturbances and brain fog meant that even watching TV or trying to text left her feeling nauseated and exhausted. During this time her father Scott had to care for Kitty and her mother as they were both struggling with long COVID symptoms.

A condition not recognized at the time

Unfortunately, in the early days of the pandemic, due to limited understanding of the effects of COVID-19, medical staff could not provide Kitty and her mother with any answers to their health problems, and the advice they were given - to be more active - only risked making their condition worse.

To this day Kitty is still struggling because of the effects of long COVID. "Sometimes I find it hard to speak. My brain feels very blurred and I can't think of a sentence. I stutter a lot. Every day is different. Sometimes I'll be fatigued and dizzy, sometimes I feel brain fog, but I can walk around with it. Sometimes, if I'm doing well, we can go out for walks, but then the next day I could be back in bed. You go through so many phases of up and down, it's like being on a rollercoaster forever."

Disrupted education

Kitty's illness forced her to take a long break from school. Online lessons were challenging, and the pressure of trying to complete homework led to further relapses. When in-person education resumed, the effort of trying to cope with the busy school day set her health even further back. Eventually, her family arranged for her to be homeschooled in the lead-up to her exams.

"I had an examiner come to my house, which made it a lot easier. I could just go back to bed as soon as I'd taken an exam, which really helped."

The way forward

Kitty and her mother manage their illness with a combination of medication and careful pacing of their activities, but they are frustrated by the lack of progress in understanding and recognition of the condition. In addition to more scientific research into long COVID, Kitty would like more educational flexibility for young people suffering from long COVID - for example, in-person tutors who could work with those experiencing fatigue and vision problems.

She'd also like to see better understanding of the condition from her peers and teachers.

"Kids think, 'Oh, I won't get it. I'm younger, I've got a healthier immune system.' But it doesn't work like that. My mum and I were very sporty. We didn't have any underlying health conditions," she says.

Her mother Sammie, who went on to found Long COVID Kids, an international charity based in the United Kingdom, voices concern about the lack of recognition for long COVID in young people: "We hear stories from families about children resuming education after COVID-19 with increased allergies or ongoing headaches, nausea or stomach upsets, but their parents are sending them back to school because they don't know it's long COVID. Those children are being asked to continue with their normal activities and are not being given the time to rest. It's not the families' fault. It's a lack of education and awareness that's the issue."

In addition to calling on schools to make adjustments for students with long COVID, she is keen to see measures introduced to improve air quality in educational establishments and more mask-wearing to prevent infections.

"If we don't do that, then we will have an entire generation of children who are likely to be at risk of learning to live with disability. We're now seeing children who are developing long COVID after reinfection, when they didn't develop it after their first, second or third infection. With the numbers of repeat infections, this is deeply concerning. Long COVID Kids has been calling for biomedical research and a focus on prevention."

Increasing recognition, research and rehabilitation for post COVID-19 condition

The scale of post COVID-19 condition and the long-term burden it is likely to have on health systems is only starting to become evident. Studies show that approximately 10-20% of individuals who contracted COVID-19 may experience continued symptoms for weeks, months or even years after their original infection, equating to millions of people worldwide.

To date, post COVID-19 condition is not well understood in children and young people and more research is needed, particularly in resource-limited countries, to understand its clinical characteristics, frequency and the risk factors that lead some juvenile populations to experience groupings of persistent symptoms.

WHO/Europe is in the process of partnering with Long COVID Europe, a network of patient-led associations that has been gathering information on the condition and sharing it with interested stakeholders since its founding last year.

WHO/Europe has also been working with patient groups to define priority areas where action is needed. It is now calling upon governments and authorities to focus attention on long COVID and its sufferers through greater:

recognition: all services must be adequately equipped, and no patient should be left alone or have to struggle to navigate a system that is not prepared or not able to recognize this very debilitating condition;

research and reporting: data gathering and reporting of cases and well-coordinated research with full participation of patients are needed to advance understanding of the prevalence, causes and costs of long COVID; and

rehabilitation: this cost-effective intervention is an investment in building back healthy and productive societies.

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Life as a young person with long COVID: "You go through so many phases of up and down, it's like being on a rollercoaster forever"

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As young people across Europe go back to school, we speak to 16-year-old Kitty McFarland about the daily difficulties of living with post COVID-19 condition (also known as long COVID) and the steps schools can take to protect their students from its symptoms. In March 2020 Kitty McFarland was a fit and healthy 14-year-old.

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This information is general information about PoTS and is not an alternative to medical advice from your doctor or other healthcare professional. You must always consult your doctor or healthcare professional.

Written by Lorna Nicholson

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What is Mast Cell Activation Syndrome?

Mast cell activation syndrome (MCAS) is a condition which can develop in children or adults. MCAS forms part of a spectrum of mast cell disorders. The relationship between the conditions which fall within this spectrum is complex, and people with MCAS may also have other mast cell disorders such as mastocytosis or hereditary alpha tryptasemia syndrome (HATS).

In people with MCAS, mast cell mediators are released too frequently or abundantly, and/or in response to triggers that are not typically considered to be harmful, for example; foodstuffs or chemicals in the environment. Inappropriately triggered inflammation among individuals with MCAS leads to a wide range of symptoms that affect multiple systems in the body.

Specific triggers and symptoms of MCAS vary greatly between individuals, and additional triggers can include fragrances, exercise, stress, and changes in temperature. MCAS symptoms can be episodic (come and go) and may often change over time within the same person. This can make it difficult for people with MCAS to identify their specific triggers, and the number of triggers and severity of symptoms may continue to increase as the condition progresses.

People with MCAS are at an increased risk of suffering Anaphylaxis after encountering a trigger. Anaphylaxis is a potentially life-threatening allergic reaction that affects multiple bodily systems. Anaphylaxis has a rapid onset of symptoms and it is important to be aware of the ABC signs:

Airways: look for a persistent cough, swollen tongue or lips, and difficulty swallowing.

Breathing: look for difficulty breathing and wheezing.

Circulation/Consciousness: look for reduced blood pressure, confusion, and collapsing.

Pre-loaded adrenaline auto-injectors, commonly known as EpiPens, are prescribed to combat anaphylaxis. If you are at risk of anaphylaxis you need to carry your auto-injector at all times, and give an injection as soon as any symptoms of anaphylaxis occur. Always call an ambulance immediately following injection, even if there is a drastic improvement.

More research is needed to understand the precise cause and mechanism of MCAS in many people. Sometimes the condition occurs in family groups, indicating that there may be genetic causes of MCAS. For example, HATS is a genetic condition caused by the presence of extra copies of the alpha tryptase gene (TPSAB1). Since the genetic causes of mastocytosis and HATS are well-characterised, genetic tests for these conditions are available.

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Mast cell activation syndrome (MCAS) is a condition which can develop in children or adults. MCAS forms part of a spectrum of mast cell disorders. The relationship between the conditions which fall within this spectrum is complex, and people with MCAS may also have other mast cell disorders such as mastocytosis or hereditary alpha tryptasemia syndrome (HATS).

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Home >> Learn More >> Postural Orthostatic Tachycardia Syndrome

Postural Orthostatic Tachycardia Syndrome

Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia that is estimated to impact between 1,000,000 and 3,000,000 Americans, and millions more around the world. POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. ¹

Diagnostic Criteria
The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension. 1,2,3,4 In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted. 4,5 POTS is often diagnosed by a Tilt Table Test, but if such testing is not available, POTS can be diagnosed with bedside measurements of heart rate and blood pressure taken in the supine (laying down) and standing up position at 2, 5 and 10 minute intervals. Doctors may perform more detailed tests to evaluate the autonomic nervous system in POTS patients, such as Quantitative Sudomotor Axon Reflex Test (QSART, sometimes called Q-Sweat), Thermoregulatory Sweat Test (TST), skin biopsies looking at the small fiber nerves, gastric motility studies and more.

Signs and Symptoms
While the diagnostic criteria focus on the abnormal heart rate increase upon standing, POTS usually presents with symptoms much more complex than a simple increase in heart rate. It is fairly common for POTS patients to have a drop in blood pressure upon standing, but some POTS patients have no change or even an increase in blood pressure upon standing. ¹ POTS patients often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation. ³ Approximately 50% of POTS patients have a small fiber neuropathy that impacts their sudomotor nerves. Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath. 1,3,4 Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position.

Quality-of-Life and Disability
Some patients have fairly mild symptoms and can continue with normal work, school, social and recreational activities. For others, symptoms may be so severe that normal life activities, such as bathing, housework, eating, sitting upright, walking or standing can be significantly limited. 1,3 Physicians with expertise in treating POTS have compared the functional impairment seen in POTS patients to the impairment seen in chronic obstructive pulmonary disease (COPD) or congestive heart failure. ¹ Approximately 25% of POTS patients are disabled and unable to work. ¹ Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure. 21, 22

History of POTS
The term "POTS" was coined in 1993 by a team of researchers from Mayo Clinic, led by neurologist Dr. Philip Low. ⁸ However, POTS is not a new illness; it has been known by other names throughout history, such as DaCosta's Syndrome, Soldier's Heart, Mitral Valve Prolapse Syndrome, Neurocirculatory Asthenia, Chronic Orthostatic Intolerance, Orthostatic Tachycardia and Postural Tachycardia Syndrome. ³ In the past, it was mistakenly believed to be caused by anxiety. However, modern researchers have determined that POTS is not caused by anxiety. 2,6,7 It is caused by a malfunction of the patient's autonomic nervous system. Thankfully, in the last 20 years, researchers have gained much more insight into imbalances of the autonomic nervous system. ¹

POTS Classifications
POTS researchers have classified POTS in various ways. Dr. Blair Grubb has described POTS as "primary" or "secondary." "Primary" refers to POTS with no other identifiable medical condition (also known as "idiopathic" POTS). "Secondary" refers to POTS with the presence of another medical condition known to cause or contribute towards POTS symptoms. ¹ Dr. Julian Stewart has described "high flow" and "low flow" POTS, based upon the flow of blood in the patients lower limbs. ⁹

Other researchers have described POTS based on some of its more prominent characteristics: hypovolemic POTS, which is associated with low blood volume; partial dysautonomic or neuropathic POTS which is associated with a partial autonomic neuropathy; and hyperandrenergic POTS which is associated with elevated levels of norepinephrine. 1,3,4 These are not distinct medical conditions and many POTS patients have two or three of the different characteristics present. For example, one patient can have neuropathy, low blood volume and elevated norepineprhine.

Who Develops POTS?
POTS can strike any age, gender or race, but it is most often seen in women of child bearing age (between the ages of 15 and 50). ² Men and boys can develop it as well, but approximately 80% of patients are female. ²

Is POTS Caused by Anxiety?
While some of the physical symptoms of POTS overlap with the symptoms of anxiety, such as tachycardia and palpitations, POTS is not caused by anxiety. POTS patients are often misdiagnosed as having anxiety or panic disorder, but their symptoms are real and can severely limit a person's ability to function. 1,3 Research has shown that POTS patients are similarly or even less likely to suffer from anxiety or panic disorder than the general public. 3,5,6,7 Research surveys that evaluate mental health show similar results between POTS patients and national norms. ²⁰

What Causes POTS?
POTS is a heterogeneous (meaning it has many causes) group of disorders with similar clinical manifestations. 1,4 POTS itself is not a disease; it is simply a cluster of symptoms that are frequently seen together. This is why the 'S' in POTS stands for "Syndrome." Since POTS is not a disease, it is fair to say that POTS is caused by something else. However, figuring out what is causing the symptoms of POTS in each patient can be very difficult, and in many cases, patients and their doctors will not be able to determine the precise underlying cause. When doctors cannot pinpoint the underlying cause of a patient's POTS, it may be called Primary or Idiopathic POTS. ¹ Idiopathic simply means "of an unknown origin."

While researchers are still working to identify the root causes and pathology of POTS, there are several underlying diseases and conditions that are known to cause or be associated with POTS or POTS like symptoms in some patients. This is a partial list:

-Amyloidosis; ¹
-Autoimmune Diseases such as Autoimmune Autonomic Ganglionopathy, Sjogren's Syndrome, Lupus, Sarcoidosis, Antiphospholipid Syndrome; 1,3, 22
-Chiari Malformation ¹⁹
-Deconditioning; ⁴
-Delta Storage Pool Deficiency ¹³
-Diabetes and pre-diabetes
-Ehlers Danlos Syndrome - a collagen protein disorder than can lead to joint hypermobility and "stretchy" veins; 3,12
-Genetic Disorders/Abnormalities; ³
-Infections such as Mononucleosis, Epstein Barr Virus, Lyme Disease, extra-pulmonary Mycoplasma pneumonia and Hepatitis C; 1,2,3,4,10,11
-Multiple Sclerosis; ¹⁴
-Mitochondrial Diseases; ¹⁵
-Mast Cell Activation Disorders; ³
-Paraneoplastic Syndrome - rare small tumors of the lung, ovary, breast and pancreas that produce antibodies; ¹
-Toxicity from alcoholism, chemotherapy and heavy metal poisoning. ¹
-Traumas, pregnancy or surgery; 1,2,3
-Vaccinations; ¹⁸
-Vitamin Deficiencies/Anemia; 16,17

Each patient is different, thus consulting with a physician who has experience in treating autonomic disorders is important. The most common treatments for POTS include increasing fluid intake to 2-3 liters per day; increasing salt consumption to 3,000 mg to 10,000 mg per day; wearing compression stockings; raising the head of the bed (to conserve blood volume); reclined exercises such as rowing, recumbent bicycling and swimming; a healthy diet; avoiding substances and situations that worsen orthostatic symptoms; and finally, the addition of medications meant to improve symptoms. 1,3 Many different medications are used to treat POTS, such as Fludrocortisone, Beta Blockers, Midodrine, Clonidine, Pyridostigmine, Benzodiazepines, SSRIs, SNRIs, Erythropoietin and Octreotide. 1,3 If an underlying cause of the POTS symptoms can be identified, treating the underlying cause is very important as well.

Currently, there is no cure for POTS, however researchers believe that some patients will see an improvement in symptoms over time. Detailed long term follow up studies on the course of POTS are sparse, but Dysautonomia International is working with researchers to begin to collect long term follow up data. With proper lifestyle adjustments, exercise, diet and medical treatments, many patients see an improvement in their quality of life. ¹ If an underlying cause can be identified, and if that cause is treatable, the POTS symptoms may subside. While the prognosis is good for most patients, researchers have noted that some patients will not improve and may actually worsen over time. ¹

The longest follow-up study done to date comes from Mayo Clinic. ²⁰ Mayo Clinic did a survey of their pediatric POTS patients seen between 2003 and 2010. Of those who responded to the survey, 18.2% reported a complete resolution of their POTS symptoms, while 52.8% reported persistent but improved symptoms. Male patients were twice as likely to report recovery. The average survey respondent had been diagnosed for about 5 years. Both patients who fully recovered and those who did not had mental health scores similar to the national norm.

Print out the 10 Facts About POTS flyer and share it with your community to help raise awareness!

1. Postural Tachycardia Syndrome. Blair P. Grubb, Circulation. 2008; 117: 2814-2817.

2. National Institute of Health, Neurological Institute of Neurological Disorders and Stroke, Postural Tachycardia Syndrome Information Page.

3. The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. Satish R Raj, MD MSCI, Indian Pacing Electrophysiol J. 2006 April-Jun; 6(2): 84-99.

4. Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Autonomic Neuroscience: Basic and Clinical 161 (2011) 46-48.

5. Postural tachycardia in children and adolescents: what is abnormal? Singer W, Sletten DM, Opfer-Gehrking TL, Brands CK, Fischer PR, Low PA, J Pediatr. 2012 Feb;160(2):222-6. Epub 2011 Oct 11.

6. Excessive heart rate response to orthostatic stress in postural tachycardia syndrome is not caused by anxiety; Masuki S, Eisenach JH, Johnson C et al. Journal of Applied Physiology 2006; 102: 1134-42.

7. Experimental induction of panic-like symptoms in patients with postural tachycardia syndrome; Khurana RK, Clinical Autonomic Research 2006; 16: 371-7.

8. Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia. Schondorf R, Low PA; Neurology 1993 Jan;43(1):132-7.

9. Increased plasma angiotensin II in postural tachycardia syndrome (POTS) is related to reduced blood flow and blood volume. Stewart JM, Glover JL, Medow MS. Clin Sci (Lond). 2006 Feb;110(2):255-63.

10. Postural orthostatic tachycardia syndrome following Lyme disease. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP; Cardiol J. 2011;18(1):63-6.

11. Postural Orthostatic Tachycardia Syndrome Associated With Mycoplasma pneumoniae. Kasmani, Rahil MD, MRCP; Elkambergy, Hossam MD; Okoli, Kelechi MD, MRCP; Infectious Diseases in Clinical Practice: September 2009 - Volume 17 - Issue 5 - pp 342-343.

12. Dysautonomia in the joint hypermobility syndrome. Gazit Y, Nahir AM, Grahame R, Jacob G. Am J Med. 2003 Jul;115(1):33-40.

13. Platelet Delta Granule and Serotonin Concentrations Are Decreased in Patients with Postural Orthostatic Tachycardia Syndrome Presented at the 51st Annual Meeting of the American Society of Hematology, December 6, 2009.

14. Autonomic dysfunction presenting as postural orthostatic tachycardia syndrome in patients with multiple sclerosis. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Int J Med Sci, 2010 Mar 11;7:62-7.

15. Autonomic dysfunction presenting as orthostatic intolerance in patients suffering from mitochondrial cytopathy. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Clin Cardiol. 2010 Oct;33(10):626-9.

16. Iron insufficiency and hypovitaminosis D in adolescents with chronic fatigue and orthostatic intolerance. Antiel RM, Caudill JS, Burkhardt BE, Brands CK, Fischer PR. South Med J. 2011 Aug;104(8):609-11.

17. Autonomic function tests in cases of chronic severe anaemia. Nand N, Mohan R, Khosla SN, Kumar P. J Assoc Physicians India. 1989 Aug;37(8):508-10.

18. Postural tachycardia syndrome after vaccination with Gardasil. Blitshteyn, Svetlana. European Journal of Neurology; 2010; Letter to the Editor

19. Orthostatic intolerance and syncope associated with Chiari type I malformation.
Prilipko, O. et al. J Neurol Neurosurg Psychiatry 2005;76:1034-1036.

20. Long-term outcomes of adolescent-onset postural orthostatic tachycardia syndrome. S.J. Kizilbash, S.P. Ahrens, R. Bhatia, J.M. Killian, S. A. Kimmes, E.E. Knoebel, P. Muppa, A.L. Weaver, P.R. Fischer. Clin. Auton. Res. October 2013. Abstract presented at the 24th International Symposium on the Autonomic Nervous System.

21. Estimation of sleep disturbances using wrist actigraphy in patients with postural tachycardia syndrome. Bagai K1, Wakwe CI, Malow B, Black BK, Biaggioni I, Paranjape SY, Orozco C, Raj SR. Auton Neurosci. Oct 2013; 177(2): 260?265.

22. POTS - A World Tour, lecture presented by Dr. Satish Raj during the 2013 Dysautonomia International Conference.

23. Postural tachycardia syndrome (POTS) and other autonomic disorders in antiphospholipid (Hughes) syndrome (APS). Schofield J1, Blitshteyn S, Shoenfeld Y, Hughes G. Lupus. 2014 Feb 25.

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Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia that is estimated to impact between 1,000,000 and 3,000,000 Americans, and millions more around the world.

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Exam Tips Display Pack - Item 491 - ELSA Support

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Exam Tips Display Pack - Item 491 - ELSA Support

This is a 'Exam tips' display pack and is a request from a secondary ELSA who loved our test tips and wanted something for GCSEs to display.

This resource has two banners, one which says 'TEST TIPS' and the other 'EXAM TIPS' so it can be used in secondary or primary. All the tips are to do with looking after the pupils wellbeing.

We have posters for:

Mindfulness

Exercise

Self-care

Breathe

Hydration

Healthy food

Positive thinking

Sleep

De-stressing

Other Resources you will love!

The Self Control Lapbook is here. This was requested from the ELSA group and this is what I have come up with. This lapbook is...

£3.00

This 'Feelings First game' will help children to learn lots about emotions and will be great fun too. Children will be making facial expressions, acting...

£1.75

This is ELSA Support's Twinkle and shine self esteem intervention for young children. It is written for children from approx. 4 to 6 but could...

£3.50

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Exam Tips Display Pack - Item 491 - ELSA Support

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Exam Tips Display Pack - Item 491 - ELSA Support This is a 'Exam tips' display pack and is a request from a secondary ELSA who loved our test tips and wanted something for GCSEs to display. This resource has two banners, one which says 'TEST TIPS' and the other 'EXAM TIPS' so it can be used in secondary or primary.

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What Children Want Their Teacher to Know

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What Children Want Their Teacher to Know

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This ‘Can I control it?’ pack is a useful activity for sorting worries and problems between things in our control and not in our control

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CSP - Safety First Approach to Long COVID Assessment — Long COVID Physio

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The Chartered Society of Physiotherapy (CSP) published a news article about Long COVID where CSP professional advisor Helen Harte write how as we improve our understanding of Long COVID, we all have a duty to improve our knowledge and skills. In this article Long COVID Physio Peer Support Co-Director Lindsay Skipper shares information about Post-Exertional Symptom Exacerbation, and the World Physiotherapy briefing paper on safe rehabilitation approaches, led by Long COVID Physio, is cited as offering advice and support for clinicians.

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CSP - Safety First Approach to Long COVID Assessment - Long COVID Physio

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The Chartered Society of Physiotherapy (CSP) published a news article about Long COVID where CSP professional advisor Helen Harte write how as we improve our understanding of Long COVID, we all have a duty to improve our knowledge and skills.

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Children & Young People | Long Covid Kids

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Page for Children and Young people on LCK website

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Page for Children and Young people on LCK website

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Children & Young People | Long Covid Kids

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Do you have questions about Long Covid? Find out more about Long Covid in children and young people with Long Covid Kids charity. Find out who can help, and who you can talk to about your Covid recovery.

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Post COVID breathing rehabilitation guide

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Post COVID breathing rehabilitation guide

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Subscribe to the Happy Newspaper

Subscribe to the Happy Newspaper

Every single day there are people helping others and doing incredible things in all corners of the planet and the majority of them aren't celebrated, but we think they deserve to be recognised. We aim to bring a refreshing twist on what we typically know as 'news', reporting on positive changes and truly inspiring people.

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Subscribe to the Happy Newspaper Subscribe to the Happy Newspaper Every single day there are people helping others and doing incredible things in all corners of the planet and the majority of them aren't celebrated, but we think they deserve to be recognised.

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Subject-by-subject support for GCSE, AS and A level students in 2022

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Subject-by-subject support for GCSE, AS and A level students in 2022

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Overview of the support being provided for each qualification for students taking GCSEs, AS and A levels in 2022.

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The NHS is offering new antibody and antiviral treatments to people with coronavirus (COVID-19) who are at highest risk of becoming seriously ill.

The treatments available are:

Nirmatrelvir, ritonavir, remdesivir and molnupiravir are antiviral medicines.

Sotrovimab is a biological medicine. It is also known as a neutralising monoclonal antibody (nMAb).

These treatments can help some people manage their COVID-19 symptoms and reduce the risk of becoming seriously ill. They are for people who have not been admitted to hospital.

Who can have a COVID-19 treatment

You're eligible for COVID-19 treatments if all of the following apply:

you're aged 12 or over

you're at highest risk of getting seriously ill from COVID-19

you have symptoms of COVID-19

you have tested positive for COVID-19

People at highest risk

You may be at highest risk of getting seriously ill from COVID-19 if you have:

Down's syndrome

sickle cell disease

HIV or AIDS

chronic kidney disease (CKD) stage 4 or 5

certain types of cancer

had certain types of chemotherapy in the last 12 months

had radiotherapy in the last 6 months

had an organ transplant

a severe liver condition (such as cirrhosis)

a rare condition affecting the brain or nerves (multiple sclerosis, motor neurone disease, Huntington's disease or myasthenia gravis)

certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease)

a condition or treatment that makes you more likely to get infections

A doctor or specialist will confirm if you are eligible for treatment.

How was this list decided?

The list of health conditions has been agreed by the UK Chief Medical Officers.

It's based on advice from an independent advisory group of health experts commissioned by the Department of Health and Social Care (DHSC).

This list is different to people who were previously considered clinically extremely vulnerable.

COVID-19 treatments research

Some antiviral medicines are also available through a national study, run by the University of Oxford.

The study is open to people in the UK who:

have tested positive for COVID-19

have COVID-19 symptoms that started within the last 5 days

are aged 50 and over, or are aged 18 and over with a health condition that puts them at high risk of getting seriously ill from COVID-19

If you take part in the study you may be randomly selected to receive an antiviral medicine.
Find out more about the University of Oxford COVID-19 antiviral study on the Panoramic trial website

How to get a COVID-19 treatment

Keep tests at home

If you are eligible for COVID-19 treatments, make sure you have some tests at home so you can get tested quickly if you get symptoms of COVID-19.

NHS Test and Trace will send you a PCR test kit to keep at home. This is a test you can do at home and send to a lab to find out if you have COVID-19.

You can also get rapid lateral flow tests to keep at home. These are tests that give a quick result and do not need to be sent to a lab. You can order COVID-19 rapid lateral flow tests on GOV.UK.

If you have not received a PCR test kit to keep at home but you think you may be eligible for COVID-19 treatments, call 119 for advice.

Take a test if you get symptoms

If you have any of the main symptoms of COVID-19 (a high temperature, a new continuous cough or a loss or change to your sense of smell or taste), take a PCR test.

You should take the PCR test as soon as possible, even if your symptoms are mild.

You can find PCR home test kit instructions for people eligible for COVID-19 treatments on GOV.UK.

You can take a rapid lateral flow test while you are waiting for your PCR test result or if you do not have a PCR test.

You must report your COVID-19 rapid lateral flow test result on GOV.UK.

If your rapid lateral flow test is positive and you have reported the result, the NHS will contact you about treatment. You do not need to wait for the result of your PCR test before starting treatment.

If your rapid lateral flow test is negative, you should still take a PCR test. This is to make sure you can get treatment if you need it.

What happens if you test positive

If you're eligible for treatment and you test positive for COVID-19, it's important to start the treatment as soon as you can. Treatments for COVID-19 need to be given quickly after your symptoms start to be effective.

The NHS will usually contact you within 24 hours of your positive PCR or rapid lateral flow test result. This will usually be by text, email or phone call.

They'll give you more information and ask questions to check if treatment is right for you.

They may ask what other medicines you take or receive, including any vitamins and minerals, so it's important to have a list of these ready.

Treatments for COVID-19 are free of charge on the NHS. The NHS will never ask for your bank account or card details, or ask you to pay for treatment.

If you have not been contacted within 24 hours of your positive PCR or rapid lateral flow test but you think you may be eligible for treatment, call your GP surgery or call 111. You cannot get help for this online.

Your GP or 111 will be able to make an urgent referral if needed.

Which treatment will I get?

The NHS will advise which treatment, if any, is suitable for you.

Sotrovimab and remdesivir are given to you through a drip in your arm (infusion). You'll usually get them at your local hospital or in a local health centre.

You'll get instructions on where to get the treatment and how to get there and back safely.

If you are given molnupiravir, or nirmatrelvir and ritonavir, they normally comes as capsules you swallow and they can be taken at home.

A hospital pharmacy will usually arrange for the medicine to be delivered to you or it can be collected by someone else such as a friend, relative or NHS volunteer responder.

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The NHS is offering new antibody and antiviral treatments to people with coronavirus (COVID-19) who are at highest risk of becoming seriously ill. The treatments available are: Nirmatrelvir, ritonavir, remdesivir and molnupiravir are antiviral medicines. Sotrovimab is a biological medicine. It is also known as a neutralising monoclonal antibody (nMAb).

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Easter activities, resources and more - BBC Children in Need

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Easter activities, resources and more - BBC Children in Need

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Your web browser is not fully supported by BBC Children in Need, so parts of the website may not function correctly.

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How do children describe their Long Covid?

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How do children describe their Long Covid?

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Blog How do children describe their LC  

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'Exhausting, Painful, Never-Ending & Lonely'. Children & Young People Describe Their Long Covid

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How do Children and Young People Describe Their Long Covid?

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How do Children and Young People Describe Their Long Covid?

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'Exhausting, Painful, Never-Ending & Lonely'. Children & Young People Describe Their Long Covid

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For the many children and families affected by Long Covid, Long Covid can seem like the elephant in the room. The 119,000 children and young people living with Long Covid (Office of National Statistics) want to tell you how it feels and what it is like for them.

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Chat Box: Online Forum for age 8-17 years

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Chat Box: Online Forum for age 8-17 years

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ChatBox | Long Covid Kids | Parents | Children | Teens

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Chat Box is our dedicated online forum for children aged 8 - 17 years living with Long Covid and the parents and caregivers that look after them.

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Long Covid Kids Connected: Zoom Hangouts for age 8-17 years

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Long Covid Kids Connected: Zoom Hangouts for age 8-17 years

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LCK Connected provides zoom 'hang outs' connecting and supporting children and young people living with Long Covid and the parents and caregivers that look after them. One of the support services provided by Long Covid Kids for children with post covid syndromes & recovering from COVID-19.

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Girl, 11, explains impact of life with long Covid

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Tillie caught coronavirus back in December 2020 and is now living with long Covid.

Long Covid is not fully understood and there is no internationally-agreed definition - so estimates of how common it is, or what the main symptoms are, vary.

The 11-year-old is one of an estimated 117,000 children aged under 16 in the UK to have suffered long Covid, according to the Office for National Statistics (ONS).

However, Tillie now wants to support other families in a similar situation.

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Girl, 11, explains impact of life with long Covid

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Tillie caught coronavirus back in December 2020 and is now living with long Covid. Long Covid is not fully understood and there is no internationally-agreed definition - so estimates of how common it is, or what the main symptoms are, vary.

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Where you can get hints, tips and information to get you through the 2022 exam and assessment season and onto the next level in your life.

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Managing Anxiety During Times of Anxiety

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Managing Anxiety During Times of Anxiety

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We use necessary cookies to make our site work. We'd also like to set optional analytics to help us improve it. We won't set optional cookies unless you enable them. Using this tool will set a cookie on your device to remember your preferences.

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ME CFS General Information | The ME Association

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GENERAL INFORMATION

ME/CFS is a complex, chronic medical condition affecting multiple body systems

People with ME/CFS need
regular monitoring and review

They are unlikely to be seen at their worst because debilitating symptoms prevent them from leaving their home

Awareness and Impact

Be aware that ME/CFS

is a complex, chronic medical condition affecting multiple body systems. The pathophysiology is still being investigated.

affects everyone differently - for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity.

is a fluctuating condition in which a person's symptoms can change unpredictably in nature and severity over a day, week or longer.

can affect different aspects of the lives of both people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional wellbeing, work, and education.

Recognise that people with ME/CFS may have:

experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.

Health professionals must take into account:

the impact this may have on a child, young person, or adult with ME/CFS.

that people with ME/CFS may have lost trust in health and social care services and be hesitant about involving them.

Approach to delivering care

Health and social care professionals should:

take time to build supportive, trusting, and empathetic relationships,

acknowledge to the person the reality of living with ME/CFS and how symptoms could affect them,

use a person-centred approach to care and assessment,

involve families and carers (as appropriate) in discussions and care planning if the person with ME/CFS chooses to include them,

be sensitive to the person's socioeconomic, cultural, and ethnic background, beliefs and values, and their gender identity and sexual orientation, and think about how these might influence their experience, understanding and choice of management.

People with ME/CFS need:

a timely and accurate diagnosis so they get appropriate care for their symptoms.

regular monitoring and review, particularly when their symptoms are worsening, changing or are severe.

Explain to people with ME/CFS and their family or carers (as appropriate):

that they can decline or withdraw from any part of their care and support plan and this will not affect access to any other aspects of their care. They can begin or return to this part of their plan if they wish to.

Access to care and support

Health and social care organisations should ensure that people with ME/CFS can use their services by:

adapting the timing, length, and frequency of all appointments to the person's needs

taking into account physical accessibility, such as how far the person has to travel, whether there is suitable transport and parking, and where rooms are for appointments

taking into account sensitivities to light, sound, touch, pain, temperature extremes or smells

providing care flexibly to the person's needs, such as by online or phone consultations or making home visits.

If a person with ME/CFS misses an appointment:

do not discharge them for not attending because it could be due to their symptoms worsening

discuss why they could not attend and how the multidisciplinary team can support them.

Be aware that people with ME/CFS are unlikely to be seen at their worst because:

debilitating symptoms or the risk that their symptoms will worsen may prevent people from leaving their home

cognitive difficulties may often mean people wait until they feel they can speak and explain clearly before contacting services.

Information about ME/CFS

Give people with ME/CFS and their family or carers (as appropriate) up-to-date information about ME/CFS as soon as it is suspected.

Tailor information to people's circumstances, including their symptoms, the severity of their condition and how long they have had ME/CFS.

Ask people regularly if they would like more information or to revisit discussions.

Explain that ME/CFS:

is a fluctuating medical condition that affects everyone differently, in which symptoms and their severity can change over a day, week or longer,

varies in long-term outlook from person to person - although a proportion of people recover or have a long period of remission, many will need to adapt to living with ME/CFS,

varies widely in its impact on people's lives, and can affect their daily activities, family and social life, and work or education (these impacts may be severe),

can be worsened by particular triggers - these can be known or new triggers or in some cases there is no clear trigger,

can be self-managed with support and advice (see the section on energy management),

can involve flare-ups and relapses even if symptoms are well managed, so planning for these should be part of the energy management plan.

Further information on ME/CFS Symptoms

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ME CFS General Information | The ME Association

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GENERAL INFORMATION ME/CFS is a complex, chronic medical condition affecting multiple body systems People with ME/CFS need regular monitoring and review They are unlikely to be seen at their worst because debilitating symptoms prevent them from leaving their home Awareness and Impact Be aware that ME/CFS is a complex, chronic medical condition affecting multiple body

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Symptoms of smell loss

Children may be less aware of their sense of smell, but you may notice they aren't interested in eating or they're not able to taste anything. Smell and taste are closely linked so this is a big clue their sense of smell has been affected.

Most children will be back to normal within two or three weeks.

Sometimes children with persistent smell loss will experience parosmia as they start to recover. This is a normal part of the process, but it can be very difficult to live with.

Parosmia is where normal odour molecules from everyday foods like bread, eggs, chocolate and onions trigger a disgust response. Someone with parosmia may feel repulsed and even physically sick from a usually pleasant smell. As well as food, some products like shampoo, or even water, can be triggers.

Parosmia is often quite intense in the early stages, but it will start to get better. You and your child will start to recognise triggers and avoid them if necessary.

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Symptoms of smell loss Children may be less aware of their sense of smell, but you may notice they aren't interested in eating or they're not able to taste anything. Smell and taste are closely linked so this is a big clue their sense of smell has been affected.

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https://www.educationalappstore.com/best-apps/5-best-mental-health-and-wellbeing-apps-for-kids

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MindShift app is based on to help young adults cope with anxiety, by acting as a portable coach that guides users through challenging situations. Designed in collaboration with Anxiety Canada, this app teaches users how to relax and helps them identify active steps to directly face and take charge of their anxiety.

The app provides a variety of methods for young people to respond to anxiety including; developing their knowledge of anxiety and symptoms, engaging in relaxation tasks, evaluating their level of anxiety in particular situations, developing realistic thinking patterns and changing behaviour.

Specific tools help users tackle issues such as improving their sleep quality, dealing with perfectionism, and handling conflict. These tools address everyday situations that contribute to increased levels of anxiety, in order to help users change their overall relationship with anxiety. The goal is to help young people learn and practice anxiety coping skills.

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10 Best Mental Health and Wellbeing Apps for Kids - Educational App Store

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MindShift app is based on to help young adults cope with anxiety, by acting as a portable coach that guides users through challenging situations. Designed in collaboration with Anxiety Canada, this app teaches users how to relax and helps them identify active steps to directly face and take charge of their anxiety.

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A meditation app that acts as a personal guide to health and happiness

An online cognitive behaviour therapy program for depression and anxiety

​

A free app designed to help teens and young adults cope with anxiety.

Helps build resilience - the ability to stay strong, motivated and optimistic even in the face of difficult obstacles

Turns the latest innovations in the science of happiness into activities and games that help you lead a more fulfilling life.

A meditation program developed by psychologists and educators to help bring mindfulness into your life

Chill Panda helps children better understand their stress and shows them ways to feel better using breathing techniques, yoga, exercise and calming games.

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A meditation app that acts as a personal guide to health and happiness An online cognitive behaviour therapy program for depression and anxiety ​ A free app designed to help teens and young adults cope with anxiety.

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‘If I get up too quickly I get really dizzy’

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‘If I get up too quickly I get really dizzy’

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Sixteen-year-old Rosie, from Dundonald, is still suffering Covid symptoms four months after contracting the virus.

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'The doctor told me long Covid didn't exist in kids'

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When 16-year-old Liliana Jackson caught coronavirus she thought it would only last a week or two.

But months later she was experiencing repeated flare-ups including skin rashes, nerve pain, chest cramps and severe fatigue.

But she and her mother Gail, who live in the East Midlands in the UK, felt let down by doctors who they say at first, didn't take them seriously.

While the majority of children and young people are not severely affected by Covid, some do experience continuing symptoms. NHS England says it's setting up specialist long Covid services for young people as part of a £100 million expansion of care for those with the condition.
Video produced by Jasmin Souesi, Trystan Young and Daniel South.

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'The doctor told me long Covid didn't exist in kids'

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When 16-year-old Liliana Jackson caught coronavirus she thought it would only last a week or two. But months later she was experiencing repeated flare-ups including skin rashes, nerve pain, chest cramps and severe fatigue. But she and her mother Gail, who live in the East Midlands in the UK, felt let down by doctors who they say at first, didn't take them seriously.

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'What is happening to me?' The teenagers trying to make sense of long Covid

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The Teenagers Trying to Make Sense of Long Covid

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The Teenagers Trying to Make Sense of Long Covid

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t took Niamh 20 minutes to wash her face - and she cried the whole time. That was in December 2020 when the 19-year-old first-year student at the University of Leeds had been living with long Covid for two months. "I didn't have the energy to move my arms," she says. She remembers sitting on the toilet, trying to muster the strength to stand up and run the tap. It took all her energy just to switch on the water. "It sounds daft, but I cried," she says. "I was like, what is happening to me?"

Niamh had led a physically active life until then. She went to the gym regularly and had swum competitively at school. But after catching Covid in freshers' week, she became a shell of her former self. She would wake up in the morning and feel overwhelmed by a tiredness that felt as if it was deep in her bones. "I have never felt fatigue like it," she says. "It was as if I'd been hit by a train or run a marathon." Gentle activities, such as taking a walk with friends, would leave her gasping for breath. She couldn't smell or taste anything. She had chest pains and palpitations. Mostly, she lay in bed, scrolling through social media and trying to ignore the thought that she was missing out on the student experience she had longed for.

For most of the next year, well into May, the symptoms persisted. Her senses of taste and smell returned to an extent, but Niamh survived on bland foods - potato waffles, vanilla protein powder - because everything else tasted foul. She would faint, or nearly faint, at least twice a month. An outing for her birthday in May ended when she collapsed on the bathroom floor. Doctors told her that she had developed a heart condition, most likely due to Covid, and might need a pacemaker eventually. Today, Niamh still faints and has palpitations, struggles with low energy and can't smell or taste as she did.

"When I stand up, even slowly, it feels like I might collapse," she says. "I ask myself, why can't I be like everyone else? Why did this happen to me?"

iamh is one of the estimated 106,000 under-25s living with long Covid in the UK. (Of these young people, 72,000 are 17-24 and 34,000 are under 16.) While long Covid is a condition that generally affects older people, teens and children can - and do - become ill. A recent study by King's College Londonfound that one in 50 children with symptomatic Covid had symptoms lasting more than eight weeks, the most common including headaches, tiredness, a sore throat and loss of smell.

"We can definitely say that children get long Covid," says Dr Elaine Maxwell of the National Institute for Health Research. "But the problem with long Covid is that it's not one definition." Common symptoms of long Covid listed by the NHS include sensory problems, such as loss of smell and taste, brain fog and cardiac-respiratory symptoms. But children tend to have slightly different symptoms - a recent study of 2m insurance claims from the US organisation Fair Health found that under-18s were more likely to report intestinal issues and "adjustment disorders" (emotional or behavioural reactions to stressful life events).

Due to this divergence, these symptoms are sometimes treated with scepticism. "We are still at the stage where some people are saying that children don't have long Covid," says Maxwell. "Is it just anxiety? Anxious parents?" This disbelief can extend to teachers, social workers and even medical professionals, compounding the stress and uncertainty of life as a teen with long Covid. (People with similar syndromes, such as chronic fatigue, often report being dismissed by healthcare workers.)

"People are being minimised and not believed," says Sammie Mcfarland of Long Covid Kids, which has 3,500 members, ranging in age from seven months to 18 years. Mcfarland set up the support group after her 15-year-old daughter Kitty got long Covid in the spring of 2020. At a medical appointment that autumn, Mcfarland - who also has long Covid - mentioned Kitty's condition to a nurse. "She told me that my daughter was mimicking my symptoms and it was related to lockdown, and she would feel better when she saw her friends again," Mcfarland says.

We are still at the stage where some people are saying that children don't have long Covid

Dr Elaine Maxwell

Dr Danilo Buonsenso, from the women and children's department at the Gemelli University hospital in Rome, says: "Long Covid is more accepted in adults than in children because there is still this dominant narrative that it is mainly psychological." Buonsenso tells me about a 14-year-old girl he treated. Other doctors had determined that her condition was psychological. After running advanced, non-routine tests, Buonsenso found that she had lung perfusion problems (her lungs were not oxygenating properly), chronic inflammation and cardiac pulmonary issues. "Long Covid is much more rare in children, which is good news," he says. "But it's still real."

Mcfarland knows of schools that have contacted social services to investigate parents of children with long Covid because they have missed so much school. "It's difficult to prove your child is ill when their symptoms can change on an almost hourly basis," says Mcfarland. "Their pattern of recovery doesn't fit the school attendance pattern they are trying to get them to adhere to." Mcfarland says some schools have been fantastic. "But they are few and far between. Schools are lacking clarity because there's no clear guidance from the government on how to respond to long Covid in young people."

Others can be sceptical, too, says James, 12, from Birmingham. "No one understands it and no one tries to sympathise that much," he says. He contracted Covid in April 2020. Since then, he has had recurrent episodes of stomach pain and diarrhoea. "I am completely fine most of the time, but every three or four weeks I have an episode for about a week."

Recently, he almost got into a physical fight with schoolmates who hid his stuff as a joke. "I took it the wrong way because I felt so ill. I couldn't be bothered to deal with any crap," he says. "I tried to kick one of them and realised I couldn't, physically." Now, he passes the time playing video games such as Fortnite and Call of Duty. Does he ever feel lonely? "I can do," he replies. "Yeah."

Taking so much time off school can cause grades to slip, too. "It takes all the energy I have - which is none, really - to drag myself to school," says Emma, 14, from Berkshire. "And when I'm there I'm thinking, just get through this day."

'I can't afford to get Covid again. I've been ill for 15 months' ... Emma and her dog, Luna. Photograph: Sarah Lee/The Guardian

Emma has had long Covid since May 2020. She is on medication for nausea and to stabilise her heart rate. Her condition has improved slightly in recent months, but she feels constantly dizzy. "It has totally flipped my life upside down," she says. Before she contracted Covid, she was a competitive gymnast. Now, she can't do a handstand. "My arms just cave in," she says.

Her attendance last year was only 30%. "I'm meant to be starting GCSEs next year," she says, sighing. "I try to catch up at home, but it's not the same as being at school. I am seriously behind now and don't know if I'll be able to stay in my year in September." On top of this, Emma is terrified about going back to school now that all restrictions in England have been relaxed.

"There are people in my school who don't care about Covid. It doesn't bother them. It's not an issue, 'It's just a cold.' Knowing that in September I will be going back to school with them, and there will be no restrictions in place, and they'll probably be going to parties ..." She sighs again. "I don't really want to go back, to be honest. Especially with self-isolation gone."

Emma's views are shared by many of her peers with long Covid. "There's a lot of concern right now about what will happen in the autumn," says Mcfarland. "At the moment, we can keep our children socially distanced and in outdoor spaces, but in September there will be no mitigation measures in [English] schools and the fear of reinfection is high."

Before Tom, 13 who lives in Devon, caught Covid, he played basketball and rugby regularly. Then he fell ill last March, "I got breathless just going up the stairs," he says. Now, likeEmma, he is anxious about returning to school. "I'm worried about catching it again," he says. He can't understand why all restrictions have been lifted so abruptly. "I'm not trying to be political or anything, but I find it a bit stupid how people don't wear masks any more," he says.

Buonsenso says the vast majority of children will not contract Covid and it is important that schools remain open. "School closures damage children and adolescents," he says. "But we need to find the best balance. Vaccinations and masking, of course, but also understanding that Covid and long Covid in young people is real."

he obvious solution would be for the government to offer under-18s the Covid vaccine, as is the case in the US (which recommends that children of 12 and older are vaccinated) and Ireland (where 16 is the minimum age; due to drop to 12 on Thursday). The UK government announced on 4 August that everyone aged 16 or older can have the vaccine within weeks, but healthy 12- to 15-year-olds remain excluded. "The majority of the parents in our group do want their children to have the vaccine and are extremely frustrated that children haven't been included on the list of people allowed to get the vaccine at the moment," says Mcfarland.

Maxwell is perplexed by the government's refusal to vaccinate under-16s. "I don't understand why the UK is so hesitant when other countries are going ahead," she says. "I haven't seen any significant reporting of adverse events in children in other countries." Buonsenso agrees, with the caveat that he would prefer to see older adults in low- and middle-income countries prioritised over children in developed nations. "I know there's a lot of debate in the UK about vaccinating children but, given how things are progressing, and the desire to keep schools open as much as possible, I would say it's advisable to give children aged 12 to 18 the vaccine," he says.

For young people, long Covid seems a particularly sharp cruelty. Time passes differently in your teens. Summer holidays spent indoors feel like interminable prison sentences; missed birthday parties and school balls sting. Also, now that the UK is opening up, the peers of teens with long Covid can enjoy relatively carefree summer holidays. "When people say Freedom Day, it's the opposite of that for me," says Emma. "I can't afford to get Covid again. I've been ill for 15 months. I can't go through that again."

There isn't a magic pill, but my psychologist assessed me and gave me advice for dealing with it as a young person

The psychological toll can affect mental health, too. "I don't think I've ever cried more than I have this year," says Niamh. Tom struggles with low mood too. "If before you were motivated to go and play sport at school, now you just feel really depressed and want to stay in," he says. "In your head you think, why would I do that if it's hard?" He has spent a lot of time in bed, watching the sitcom Rick and Morty or playing video games.

James, likewise, sounds completely miserable. "Mentally, I've just dropped off the end," he says. Because he feels ill, James is constantly irritable. He gets into fights with his older brother. "I have a really short fuse now," he says. "And the consequences of that fuse are different. It can be anger or sadness or anxiety."

So much time off school has also left many young people feeling estranged from their friends. Emma's close friends have been accommodating of her energy levels, but it is still hard to miss out on fun with her wider year group. "You see people on social media going swimming in the lake or shopping in London. I can't make it to London because even an hour in the car is too much for me. When I see a group of girls in my class going to the beach and I'm just sitting at home, it makes me feel quite useless and a bit stuck."

The overwhelming sentiment among teens with long Covid is a sense of loss. "I have missed out on everything," says Emma. "This is an important part of your life, your teenage years." What does she miss most about her old life? "Sometimes I feel so trapped in one spot," she says, in a strangled voice. "Just to be able to go to the beach or travel somewhere. And gymnastics. There are a lot of things."

There are signs of hope and recovery, however. Niamh has visited a long Covid clinic and is doing much better. "They were great," she says. "They don't have the answers; there isn't a magic pill they can give you to sort you out. But my psychologist assessed me and gave me advice for dealing with it as a young person." She is gradually increasing her time socialising with friends and has festivals booked this summer. "I have to have rest days before, to build up my strength, and to recover afterwards," she says.

Proper management of long Covid in teens requires investment, as well as specialists to assess and manage each young person on a case-by-case basis. "Understanding long Covid is really expensive," says Buonsenso. "It needs a lot of investigation and different specialties." In June, NHS England announced that it will set up 15 paediatric hubs specialising in long Covid. Mcfarland also hopes that the Department for Education will introduce measures to mitigate Covid transmission in schools before the summer holidays end. "We need to see ventilation and Hepa filtration, in addition to CO ₂ monitors," she says. "Children need to be educated in a place of safety and that is not currently on offer."

For teens with long Covid, at least there is hope that, with time and proper medical management, symptoms will abate and normal life will resume. "I am not the person I was last year," says Niamh. "I have been through so much. But I feel mentally stronger than I ever have in my life because I've been through it in the last year. It's like, bring on anything else."
In the UK and Ireland, Samaritans can be contacted on 116 123 or by emailing jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org.

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'What is happening to me?' The teenagers trying to make sense of long Covid

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t took Niamh 20 minutes to wash her face - and she cried the whole time. That was in December 2020 when the 19-year-old first-year student at the University of Leeds had been living with long Covid for two months. "I didn't have the energy to move my arms," she says.

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Books and Stories to Support Emotional Development

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Books and Stories to Support Emotional Development

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We may get commissions for purchases made through links in this post. For more information go to Disclaimer & Disclosure.

Mindfulness Colouring

Mindfulness colouring is a fun and simple way to add calm into your life and be present. Use these free mindfulness colouring sheets that you can print at home to help you be more mindful every day.

It is not for nothing that mindful coloring books have been so popular lately. Being mindful is great not only for your mind and soul but also to your body. It is meditation, just like yoga, but without the physical part.

So, do you know what exactly mindfulness is?

Being mindful means being present and aware of the moment. It means taking the time to focus on how you feel and what is happening around you.

I am super fan of using my bullet journal to practice mindfulness too but it is good to know there is more than one way to do it.

Why mindfulness coloring pages are good for you?

Studies show that there is a clear correlation between mindfulness and art therapy. Calming coloring pages, along with other tasks with predictable outcomes such as drawing, journaling and kniting, are a perfect de-stress-er activities and do wonders for relaxing your mind.

I am sure you have felt that way when colouring or doodling before, haven't you?

The reason is because coloring, just as much as meditation, allows you to switch off your brain from the daily thoughts that populate your mind and focus on the task at hand - the immediate moment.

And that is mindfulness! Coloring is a deliberate anti stress therapy that helps your body and mind appreciate the little things in life and be present. It helps you learn how to better react to situations and achieve a state of calm that clears your mind of stress and discontent.

Being mindful takes time to learn and these therapy coloring pages will help you get there. Because they are so good at helping you release stress by being more mindful, art therapy colouring books are frequently used for both children and adults, in classrooms, at work or at home.
Loving the mindfulness colouring book pdf? Check out our Art Journaling page for more inspiration.
Benefits of mindfulness colouring for children and adults

Mindfullness colouring can help you in so many ways. Below I have listed a few benefits of relaxing coloring pages to keep in mind:

Art therapy coloring pages help you express yourself emotionally, without having to use words.

Mindfulness colouring for kids helps keeping them busy. It reinforces fine motor skills, keeps them entertained and helps improve their attention span.

Mindful colouring for adults will help develop mindfulness and concentration skills too.

To help you become more mindful I have organized this mindfulness colouring sheets free download printable. Once you download it you are free to print it as many time as you want for personal use.

To get the most out of these amazing benefits, simply print off these sheets, grab some pencils and have fun.

Please subscribe here to get access to the mindfulness coloring book pdf which you can print at home.

My Favorite Coloring Supplies

Below are some of my favorite tools for coloring books and pages. You can check my list of coloring markers here.
Artlicious Colored Pencils for Adult Coloring Books

Crayola Super Tips Washable Markers

Crayola 58-7858 Crayola 40 ct Broad Line Ultra-Clean Washable Markers Toy

Premium Printer Paper

The Mindfulness Coloring Book

Get our exclusive Mandala Coloring Book HERE
Want even more coloring pages? Try our HUGE 70-page coloring book with the link below

Did you enjoy the download? Show us your finished sheets below or tell us how they made you feel.

More coloring posts you will enjoy:
PIN FOR LATER!

Adult Coloring Sheets

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13 Free Printable Mindfulness Colouring Sheets

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We may get commissions for purchases made through links in this post. For more information go to Disclaimer & Disclosure. Mindfulness colouring is a fun and simple way to add calm into your life and be present. Use these free mindfulness colouring sheets that you can print at home to help you be more mindful every day.

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Therapeutic Story Nottinghamshire EPS The Little Elf who missed his Birthday Party

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An ELSA requested a PowerPoint on the 5 ways to wellbeing. Suitable for KS2 upwards. This goes through the 5 things you need to try and do each day to help your wellbeing.

This PowerPoint is protected from editing to ensure it works correctly for you. When you first go to open it you will be asked to input a password to edit or to click read only. Please click Read Only You do not need a password, that is purely for our benefit. Please read the instructions prior to opening the PowerPoint.

You do need PowerPoint installed on your computer or on your IPAD to ensure it runs correctly. You can download a FREE APP for PowerPoint from the Apple store.

The following download is zipped so please open on a computer or laptop. It may not open on a phone or tablet unless you have an app installed.

Download: 5 a day to wellbeing

For more products you might find helpful

Amazon surprise find: Bubble pop sensory toy - great calming activity. Who doesn't like to pop bubbles? This can be used over and over again.

Other Resources you will love!

This is a huge pack of resources to help children's wellbeing. You can glue the pocket into an exercise book and then add things to...

£3.00

This Wellbeing bundle pack will help to promote good mental health. It includes three Good Mental Health resources, a questions pack, a display pack and...

£5.00

This wellbeing week poster set would be a great daily activity for pupils in September when schools go back. Each day has a focus. Mighty...

£2.50

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5 ways to wellbeing - ELSA Support for emotional literacy

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An ELSA requested a PowerPoint on the 5 ways to wellbeing. Suitable for KS2 upwards. This goes through the 5 things you need to try and do each day to help your wellbeing. This PowerPoint is protected from editing to ensure it works correctly for you.

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Three good things gratitude practice. People who are grateful tend to be happier and healthier. Being grateful can help people cope with stress. This is such a simple and quick thing to do each day.

This is a fantastic exercise to get into each day to help improve mood and happiness. It is suitable for anyone to do. You might want to do it too!

It is short and simple gratitude practice. It is best to do this at the end of the day or for children perhaps after school or before bed.

There are several sheets that can be used according to the child's needs.

Reflect on your day. What went well? What was good about today? It can be the tiniest thing.
Write down the three things. You don't have to write lots, just a few words. Young children could draw a small picture in each box or use the drawing sheet and print out a weeks worth.
Reflect on those good things. Fill your mind with those good things.

Choose the sheet you want to use and print it out for a full week to try. I have included plain black and white versions too!

Download: Three good things

For more products you might find helpful

Amazon surprise find: Multicultural cut out hands - Use for helping hands, work on hand prints, eg. ways to help others written on each finger, displays etc.

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Three good things gratitude practice - ELSA Support

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Three good things gratitude practice. People who are grateful tend to be happier and healthier. Being grateful can help people cope with stress. This is such a simple and quick thing to do each day. This is a fantastic exercise to get into each day to help improve mood and happiness.

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Guided Imagery - Sleep Relaxation for Children - Mindfulness - Family Wellbeing - Anxiety Support

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Guided Imagery - Sleep Relaxation for Children - Mindfulness - Family Wellbeing - Anxiety Support

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What are some of the symptoms of PANS/ PANDAS?

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

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

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

Tics - moving in strange ways or making strange noises.

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

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

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

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

Author: Dr Ffion Jones

©️Invizo Ltd 2020

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