Frequently Asked Questions about PANS and PANDAS
PANS and PANDAS are complex medical conditions with a variety of symptoms and presentations, including abrupt changes in behaviour, difficulties with movement and the often-sudden onset of mental health challenges. Awareness remains low amongst medical professionals, and our community tell us it can be difficult to find accurate, trustworthy information about how to best support someone living with the conditions. On this page, you will find answers to some of the questions we get asked about PANS and PANDAS most often.
Please note: The information provided on this page is for general informative purposes, based on scientific research and lived experiences. It is not a substitute for medical or legal advice. Always seek guidance from qualified health professionals for concerns about a child or young person’s health.
Select a topic, or scroll through the questions below:
What are PANS and PANDAS?
What are the conditions PANS and PANDAS?
PANS and PANDAS are neuropsychiatric conditions. This means they are medical conditions which have both neurological (e.g. difficulties with thinking or moving) and psychiatric (i.e. mental health) symptoms.
PANS and PANDAS are often grouped together because they share lots of symptoms in common. Both conditions can begin quite suddenly, and symptoms may come and go over time.
What is the difference between PANS and PANDAS?
PANS is the broad category, or ‘umbrella term’ for the condition. PANDAS is a subset of PANS.
- PANDAS means that the initial trigger at onset was Strep A.
- PANS can be triggered by numerous types of infections that cause inflammation, such as influenza, chicken pox or Covid.
Subsequent flares of PANS or PANDAS may be triggered by other infections, both bacterial and viral.
What causes PANS or PANDAS?
Recent scientific research suggests PANS and PANDAS are caused by an abnormal immune or inflammatory response to infection.
In the case of PANS, the abnormal response that causes symptoms has been reported to have been triggered by a variety of different infections. Reported triggering infections include Lyme disease, flu (for example H1N1), mononucleosis (mono), and mycoplasma bacteria. Recent research also suggests COVID-19 infection can act as a trigger for PANS.
The abnormal response in PANDAS is initially triggered by Group A Streptococcal (GAS) infection.
How common are the conditions?
The true prevalence of PANS and PANDAS is currently unknown. There are differing opinions about how common they are because research is still developing, awareness among medical professionals remains limited, and there is no biological marker to support diagnosis. This combination, along with the complex nature of the conditions, makes identifying cases challenging. In addition, published studies report widely varying estimates, depending on how strictly cases are defined.
We are working with the British Paediatric Surveillance Unit (BPSU) and the Child and Adolescent Psychiatry Surveillance System (CAPSS) to launch a UK-wide surveillance study this year to help bring greater clarity and move us closer to answering this question.
What are the symptoms of PANS?
PANS is a neuropsychiatric condition which is triggered by a misdirected immune response to a variety of triggers. The primary symptoms of PANS are:
- Obsessive compulsive behaviours. Often an abrupt, acute, dramatic onset* (usually within 24-48 hours)
- Severely restricted food intake related to contamination fears, obsessional fears or a new obsession with body image or weight.
Accompanied by two or more of the following secondary symptoms:
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- Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes)
- Tics
- Emotional lability and/or Depression
- Irritability, Aggression, and/or Severely Oppositional Behaviours
- Behavioural (Developmental) Regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety).
- Sudden Deterioration in School Performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills)
- Motor or Sensory Abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture).
- Insomnia and/or Sleep disturbances
- Enuresis and/or Urinary frequency
- Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and/or Hallucinations
* We would like to note that the requirement within the diagnostic criteria for an abrupt or acute onset was originally stipulated in order to create a well-defined cohort of patients for research purposes. It is beginning to be acknowledged that onset may not always be as rapid as the diagnostic criteria currently state, however they have yet to be updated to reflect this.
What are the symptoms of PANDAS?
PANDAS is a subset of PANS. It is a neuropsychiatric condition which is triggered by a misdirected immune response to a Streptococcal infection, which results in a variety of symptoms:
- Obsessive compulsive behaviours. Often an abrupt, acute, dramatic onset* (usually within 24-48 hours)
- Tics; particularly multiple, complex or unusual tics
Whilst not necessary for a diagnosis, children may also experience some of the following secondary symptoms, similar to those seen in PANS:
-
- Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes)
- Emotional lability and/or Depression
- Irritability, Aggression, and/or Severely Oppositional Behaviours
- Behavioural (Developmental) Regression (increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety).
- Sudden Deterioration in School Performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills)
- Motor or Sensory Abnormalities (dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture).
- Insomnia and/or Sleep disturbances
- Enuresis and/or Urinary frequency
- Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and/or Hallucinations
* We would like to note that the requirement within the diagnostic criteria for an abrupt or acute onset was originally stipulated in order to create a well-defined cohort of patients for research purposes. It is beginning to be acknowledged that onset may not always be as rapid as the diagnostic criteria currently state. However, there are still differences in opinion regarding what acute onset means, and the diagnostic criteria have not yet been updated to reflect this acknowledgement.
What is a ‘flare’?
Families of people with PANS and PANDAS often talk of ‘flares’. These are times when an individual experiences a worsening of symptoms.
Families report that triggers for flares can vary from exposure to an infection (bacterial or viral), to an allergy, a food intolerance or exposure to mould or toxins. This is why tracking symptoms and illnesses can prove so beneficial in pinpointing causes, and therefore hopefully identifying best treatment protocols.
There isn’t yet much research into this, however some families also report that flares can be triggered by wobbly teeth, chlorine, gluten, diary, sugar, perfume, allergens such as dust and pollen, and strong household smells including cleaning bleach. For many people affected by flares, discovering their cause is a process of elimination.
What does ‘acute onset’ mean?
Acute onset means that the symptoms start abruptly and without warning. In the classic PANS case, parents can name the date that their child woke up a different person. However, other parents report a more gradual onset.
It is also important to point out that the requirement within the diagnostic criteria for an abrupt or acute onset was originally stipulated in order to create a well-defined cohort of patients for research purposes. It is beginning to be acknowledged that onset may not always be as rapid as the diagnostic criteria currently state. However, there are still differences in opinion regarding what acute onset means, and the diagnostic criteria have not yet been updated to reflect this acknowledgement.
What is the difference between ‘obsessive-compulsive behaviours’ and OCD?
OCD stands for obsessive-compulsive disorder. It is a mental health condition which causes people to carry out particular behaviours (compulsions) in order to feel better after having distressing and unwanted thoughts (obsessions). OCD is different from other disorders or conditions, and is different to PANS or PANDAS.
Obsessive-compulsive behaviours, such as repetitive actions and chronic anxiety, are symptoms which are related to various diagnoses, including PANS and PANDAS. The international OCD foundation state that “In contrast to the gradual onset of symptoms in pediatric OCD, symptoms for patients with PANDAS or PANS may develop over the course of a few days and may quickly become severe”.
The International OCD Foundation also provide guidance for medical professionals about the distinction between OCD and a differential diagnosis of PANS or PANDAS.
Examples of obsessive-compulsive behaviours include:
- Intrusive thoughts
- Contamination obsessions and compulsions
- Obsessions that harm will come to others, or related compulsions
- Sexual or religious obsessions
- Repeating compulsions
- Symmetry and exactness obsessions
- Ordering or arranging compulsions
- Counting compulsions
- Checking obsessions or compulsions
- Excessive reassurance seeking
- The need to touch, tap or rub
- Intrusive images, words, music or nonsense sounds
- Ritualised eating behaviours or severely restricted food intake may be related to contamination fears, obsessional fears of choking, or other obsessional fears including a new obsession with body image or weight.
Is PANS the same as Encephalitis?
Autoimmune Encephalitis (AE) refers to a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain.
More research is needed to determine whether PANS is a form of AE, but some children who are diagnosed with PANS are eventually diagnosed with AE.
Why do some professionals use different terms for PANS or PANDAS?
The terms ‘PANS’ and ‘PANDAS’ are the most widely used names for these conditions in the UK. Sometimes, doctors might use other words to describe PANS or PANDAS, such as:
- ‘acute-onset neuropsychiatric presentation’
- ‘post-infectious neuropsychiatric symptoms’
- ‘PANS-like presentation’
- ‘behavioural change’
When a doctor suspects PANS or PANDAS, they might use words like:
- ‘immune-mediated’
- ‘post-infectious’
- ‘inflammatory’
It is common for professionals from different areas of work to use the name that is most appropriate to their profession. For example, a clinician might use very specific medical terms, but someone talking to or working with your child or young person may use more general language.
We understand that you may feel concerned if a doctor has used a different term in a letter or assessment, especially if you want to share the letter with another support team, such as your child’s school. Please feel free to show them this page, copy and paste the content, or ask them to contact us directly if they have any questions about the wording use: info@panspandasuk.org
How is PANS or PANDAS diagnosed?
How are the conditions diagnosed?
PANS and PANDAS are both ‘clinical diagnoses’, rather than medical diagnoses. This means they are diagnosed by looking at an individual’s symptoms and clinical history rather than relying on a diagnostic test or biomarkers.
There are not yet any specific tests or biomarkers which prove or disprove the conditions. This means that a diagnosis of PANS or PANDAS is both a clinical diagnosis and a diagnosis of exclusion; ruling out other causes for symptoms and behaviours until PANS or PANDAS is established as the remaining cause. Lab work and additional testing can be useful to identify an infectious trigger, rule out other diagnoses, and inform treatment plans.
The diagnostic criterion is:
PANS
- To be diagnosed with PANS, an individual needs to develop one of the major symptoms (OCD-behaviours or restricted food intake) as well as at least two other symptoms from the PANS or PANDAS symptom lists.
- Symptoms often develop suddenly (usually within 24-48 hours)* and very severely. Symptoms may appear to get better before getting worse periodically; this is referred to as a relapsing-remitting course.
PANDAS
- To be diagnosed with PANDAS, a person only needs to develop one of the major symptoms (OCD-behaviours or tics). However, many people with PANDAS also have other symptoms from the PANS or PANDAS symptom lists.
- Like PANS, symptoms often develop suddenly* (usually within 24-48 hours) and very severely. Symptoms appear to get better before getting worse periodically – this is referred to as a relapsing-remitting course.
- In PANDAS, the development of symptoms happens after a ‘Group A Streptococcal (GAS) infection’, more commonly known as ‘strep’. Strep infections cause many common illnesses such as strep throat (a mild sore throat), impetigo, cellulitis, tonsillitis, scarlet fever and pneumonia. More information on GAS infections.
* We would like to note that the requirement within the diagnostic criteria for an abrupt or acute onset was originally stipulated in order to create a well-defined cohort of patients for research purposes. It is beginning to be acknowledged that onset may not always be as rapid as the diagnostic criteria currently state, however they have yet to be updated to reflect this.
If my child didn’t have an acute onset, does that mean they cannot have PANS or PANDAS?
No, your child might still have PANS. Given that many parents and providers don’t know what they are looking for (or looking at) when a child has a new onset, it is possible for an acute onset to be missed. Some children’s initial symptoms are mild, or they start when a child is very young, and the behaviour is labelled as “a phase” or “developmentally appropriate”. It is also important to point out that the requirement within the diagnostic criteria for an abrupt or acute onset was originally stipulated in order to create a well-defined cohort of patients for research purposes. It is beginning to be acknowledged that onset may not always be as rapid as the diagnostic criteria currently state. However, there are still differences in opinion regarding what acute onset means, and the diagnostic criteria have not yet been updated to reflect this acknowledgement.
I cannot remember any illness prior to the onset of PANS symptoms, does that mean it cannot be PANS?
Some families report that their children do not show normal symptoms of an illness when they have PANS. Additionally, it is not yet fully understood how long the gap between infection and onset may be for different individuals or for different infections. This means that a parent or clinician may not link onset with previous infection.
My child has never had a positive Strep test, does that mean they do not have PANDAS?
Not necessarily. Not all children with present with classic strep signs – sore throat, fever, headache, and stomach-ache. Strep infection can also infect other areas of the body, such as the skin, ears or the anus. If children aren’t swabbed thoroughly, or in the right places, an infection might be missed. Additionally, rapid strep tests are not always 100% accurate and may miss active infections.
Why do some children get PANDAS after a Strep infection, while others do not?
Science has not yet answered this question. Possible reasons might be:
Strain Differences: There are over 150 strains of Group A streptococci (GAS). Only a small number of these can cause acute rheumatic fever and Sydenham chorea, which are conditions upon which the medical model of PANDAS is based. It is possible that only certain strains of Strep A are able to cause PANDAS.
Genetic Vulnerability: It is possible that some people are genetically more susceptible to developing this abnormal immune or inflammatory response to Strep A.
Location of Strep Infection: Strep infections typically occur in the throat, tonsils, skin and anus. Although “strep throat” infections are the most common trigger, it is also possible that Strep A may enter the nasal cavity or influence neuroimmune cells along the olfactory nerve, providing access to the brain.
My child does not have any tics, does that mean it cannot be PANS or PANDAS?
No. A diagnosis of PANDAS requires the presence of obsessive-compulsive behaviours OR tics. Not having tics does not mean someone does not have PANDAS.
A diagnosis of PANS requires the presence of obsessive-compulsive behaviours OR eating restrictions, in addition to two or more symptoms listed in the diagnostic criteria. While this list does include Tics, this is not a required symptom for diagnosis of PANS.
If my child has a PANDAS diagnosis, does this mean that they will only ever flare in response to Strep A?
No, PANDAS means that the initial trigger at onset was Strep A. Subsequent flares of symptoms may be triggered by other infections, both bacterial and viral.
Do people with PANS or PANDAS sometimes incorrectly receive other diagnoses?
Many individuals struggle to get a diagnosis of PANS or PANDAS. They might receive several different diagnoses, or one that does not fully explain their symptoms.
In the UK currently, most doctors are not trained to recognise PANS or PANDAS, so they might not be able to consider these diagnoses. The symptoms can also look like other conditions such as OCD, Tourette’s syndrome, anxiety, or neurodivergence. This overlap, and the fact that people can also have more than one condition, can lead to mistakes in diagnosis.
Diagnostic overshadowing is when a doctor thinks new symptoms are part of an existing condition, instead of recognising them as something new. This could also cause misdiagnosis if a person develops PANS or PANDAS who already has pre-existing conditions and/or is neurodivergent.
For more information, please read our new article about PANS, PANDAS and Neurodivergence.
Why is it so challenging to get diagnosed and treated?
There are several reasons why it can be challenging for people with symptoms of PANS and PANDAS to be diagnosed and treated. Some of these reasons are set out below:
- Symptoms of PANS and PANDAS are similar to, or overlap with, symptoms experienced in other neuropsychiatric, neurodevelopmental and autoimmune conditions
- There is no diagnostic test or biomarker which allows for a definitive diagnosis; therefore it a clinical diagnosis and remains a diagnosis of exclusion.
- Whilst the absence of a diagnostic biomarker is common in many neuropsychiatric conditions, the variability in type, severity and duration of symptoms between individuals further complicates both diagnosis and treatment.
- Although the body of scientific research into PANS and PANDAS is growing, some existing research findings have been conflicting and much remains to be fully understood about the conditions, such as:
- What the causes and biological mechanisms are
- How rare or common the conditions are and who they affect
- How best to diagnose them
- What the most effective treatments are
- What the course of the illness is likely to be
The need for more high-quality research to improve understanding of the conditions and care for people affected is clear. Internationally, there is increased research being carried out into the conditions. In the UK, we are working closely with the PANS PANDAS Steering Group, NHS England, the National Institute for Health and Care Research and the PANS PANDAS All Party Parliamentary Group, to drive forward the research in the UK.
Find out more about some of these initiatives at these links:
- The PANS and PANDAS Evidence and Gap Map
- The PANS PANDAS Research Working Group
- A brief history of PANS PANDAS UK
Who can develop PANS or PANDAS?
Who can develop PANS or PANDAS?
A diagnosis of PANDAS must be made between three years of age and puberty. A person of any age can be diagnosed with PANS. Although both conditions have the word ‘paediatric’ in their name, it is known that the conditions can persist into adulthood.
Can neurodivergent individuals develop PANS or PANDAS?
Yes, neurodivergent individuals can also develop PANS or PANDAS. Neurodivergence refers to variations in how individuals process information, learn, and behave. Common forms of neurodivergence include autism, ADHD, dyslexia, dyspraxia, and dyscalculia.
Some symptoms of PANS and PANDAS may overlap with neurodivergent traits, making these conditions harder to identify. Some experts believe that autistic individuals might be at greater risk of developing these conditions, and more research is needed. It is important for neurodivergent individuals to receive a medical evaluation if PANS or PANDAS is suspected and there is an acute, marked or distressing change. For more information, please read our new article about PANS, PANDAS and Neurodivergence.
Can adults get PANS or PANDAS?
PANDAS is a diagnosis which requires paediatric onset, whereas PANS can begin at any age despite also being described as a paediatric condition. Both conditions can persist into adulthood, and some adult-onset cases of PANS have been described in research literature.
Access to diagnosis and treatment in the UK is challenging for everyone, but especially so for adults. We are working to ensure that adults with PANS and PANDAS are firmly on the agenda in all our conversations with policymakers as we continue to champion improved healthcare for everyone affected by the conditions. While we are working on producing adult-specific resources, support for adults is available via our partner organisation, EXPAND.
EXPAND’s resources for affected adults include:
- Information about adult patient categories
- International Facebook support group
- Advocacy organisations
- Webinars
- Research journal articles
- Articles and blogs about adult experiences
What is the outlook for people with PANS or PANDAS?
Is it possible to recover from PANS or PANDAS?
If identified and treated early and appropriately, it may be possible to make a full recovery from PANS or PANDAS.
In some cases, individuals may not respond as well or as quickly to treatment, particularly if treatment starts a long time after symptoms begin. However, experience and community testimony tells us that ongoing care and tailored support can help every individual to achieve the best quality of life for them; despite the limitations and challenges they may experience.
A diagnosis of PANS or PANDAS can be very challenging, and in the most severe cases these conditions can become life-threatening, particularly if severe symptoms of food restriction or suicidal thoughts occur.
This information can be difficult to read, please make use of our support services if you need them. You may also wish to look at our real-life stories from members of the PANS and PANDAS community which demonstrate different journeys of resilience and hope in adversity.
How will PANS or PANDAS affect my child’s future?
It is very difficult to provide a definitive answer to this question, as every child or young person’s experience of PANS or PANDAS is unique. We do know that the symptoms can be extremely challenging and disruptive. Some children and young people may need time away from education, experience changes in friendships, or struggle immensely with their mental and physical health during periods of severe symptoms.
At the same time, lived experiences and stories from within the PANS and PANDAS community show that outcomes vary widely. Some children and young people do recover fully or see significant improvements over time. For others, however, symptoms can remain severely debilitating or fluctuate over the longer term, and the impact on daily life can continue.
Recognising this full range of experiences is important.
At present, research has not yet established why outcomes vary so widely and there is still much that is not yet understood. Because the science is ongoing, it is not possible to predict with certainty whether a child or young person will recover quickly, improve gradually, or continue to experience longer-term or fluctuating symptoms.
For many families, hope comes from understanding that improvement is possible, while also knowing that they are not alone if progress is slow or uncertain. This is why the charity is dedicated towards improving awareness and producing resources designed to help teachers, parents and medical professionals understand the conditions more.
How do I get medical help or treatment?
What kind of doctors recognise and treat PANS and PANDAS?
Usually, children and young people with symptoms of PANS or PANDAS will see a GP or family doctor, who can then refer them to a paediatrician for more detailed investigations before considering diagnosis and treatment. At this stage, other doctors and specialists may be involved; such as neurologists, immunologists and psychiatrists. This may depend on your child’s symptoms, and on what services are available in your local area.
How can I prepare for an appointment with a GP or consultant?
To get ready for your child’s appointment, it can help to put together a simple timeline showing when their symptoms first started, how things have changed over time, and any illnesses or infections that came before a change in behaviour. Make a list of all the symptoms you’ve noticed, physical, emotional and behavioural and don’t worry about whether they seem connected or not. Some parents or carers also find it helpful to bring short video clips to show things that may not appear during the appointment. When you talk through symptoms, try to mention each one clearly so nothing gets overlooked. Giving a full and balanced picture helps reduce the chance of a skewed assessment or the wrong kind of referral.
Before you go, jot down any questions you want to ask and think about what you’re hoping for by the end of the appointment, such as a diagnosis, tests, a treatment plan, or advice about what to expect next. You might also want to know how to get in touch with the clinician if things change. If you can, consider taking someone with you for support and to help take notes.
It may also be helpful to print off our information leaflet for GPs and Paediatricians and take a copy to your appointment, as this can support conversations about diagnosis and treatment.
What treatment or testing should I ask for?
Please read our GP leaflet for details of appropriate tests and treatments.
A referral to a paediatrician (ideally with experience of PANS or PANDAS) should be made for ongoing treatment. This can be done privately or via the NHS.
Individuals experiencing obsessive-compulsive behaviours, eating restrictions or mental health concerns often benefit from cognitive-behavioural therapy (CBT) or counselling, so the GP may wish to refer to CAMHS (Child and Adolescent Mental Health Services), as well as a paediatrician. This mental health support is an important part of the support available for someone with PANS and PANDAS, however it is important that your child also receives a full medical evaluation.
The recommendations for best-treating PANS and PANDAS, according to peer-reviewed international guidelines, are three-fold. This means that all three types of treatment should be offered:
- Anti-microbial treatment
- Immune modulatory treatment
- Neuro-psychiatric treatment.
Our doctor will not recognise or consider PANS or PANDAS, what can I do?
Although awareness is increasing, if you experience confusion or dismissal from medical professionals, it can be helpful to share the PANS PANDAS international treatment guidelines with them, as well as this statement from the PANS PANDAS Steering Group (PPSG), which incorporates several Medical Royal Colleges and other stakeholders. You can also inform them that UK treatment guidelines are currently under development with the NHS. In addition, this letter from the Department of Health and Social Care explicitly outlines the UK position on PANS and PANDAS, providing official recognition of the conditions. PANS PANDAS UK provide many resources for medical professionals, including access to a free MIMS Learning training session for GPs, to help them understand the conditions and how they may affect children and young people.
Your GP can refer you to a paediatrician. Your paediatrician can then consult with tertiary specialists, such as paediatric neurologists, to gather further information about the condition.
My GP will only refer to CAMHS, what should I do?
Child and Adolescent Mental Health Services (CAMHS) has an important role to play in supporting young people with the conditions, but this is as part of a multidisciplinary team rather than as sole health provider. PANS and PANDAS are neuropsychiatric conditions, requiring medical expertise of a paediatrician or paediatric neurologist to diagnose and advise appropriate treatment.
Psycho-therapeutic interventions, such as those provided by CAMHS, will not address the root cause of the symptoms, although these may prove useful at a later stage to aid symptom management. For example, individuals experiencing obsessive-compulsions often benefit from Cognitive Behavioural Therapy; something which may be provided at the same time as pharmaceutical treatment. If you suspect that your child’s symptoms may fit with a diagnosis of PANS or PANDAS, you are entitled to ask for a referral to Paediatrics for further investigations to rule the conditions in or out.
If you are a CAMHS professional, you may find it useful to read our CAMHS information leaflet to help you understand the conditions.
My appointment is taking a long time; will this affect my child’s response to treatment?
Not necessarily. Due to the nature of these conditions, and the lack of understanding about them in the UK, it can take months or years to receive a diagnosis and begin treatment. Early diagnosis and treatment is preferable to reduce suffering. However, in many cases, children and young people are still able to see huge improvements even after waiting for treatment.
If you are experiencing a long wait for an appointment, or are concerned about accessing treatment, you could consider contacting the Patient Advice and Liaison Service (PALS). The service cannot speed up referrals or waiting times but can investigate the cause of delay.
Can PANS PANDAS UK recommend any doctors or specialists?
As a charity, we cannot advise on specific specialists. However, our support groups can be good places to ask parents and carers for recommendations for local specialists, including private support, as well as advice on symptom management.
Why is there not an NHS page for PANS or PANDAS?
In 2023, PANS PANDAS UK approached NHS Health A-Z to ask for PANS and PANDAS to be included on their website. At that time, the response was that they were unable to include information about all health conditions on the NHS website and that any new content would be dependent on user needs, clinical guidance and capacity.
Clinical guidelines for PANS and PANDAS are currently being developed with support from the Royal College of Paediatrics and Child Health. Once these are published, we will apply for the NHS website to be updated accordingly. More information about this work can be found here: www.theppsg.org.uk
As of February 2026, PANS and PANDAS have been recognised by the House of Commons Library, a research service access by Members of Parliament and their staff to inform briefings, debates and decision-making.
What is being done to change the perception of PANS and PANDAS in the UK?
In 2022, the first meeting of the PANS PANDAS Steering Group (PPSG) was held. The PPSG is committed to improving the standards of care for people living with PANS and PANDAS in the UK.
The PPSG has representatives from PANS PANDAS UK, the British Paediatric Neurology Association, the Royal College of Psychiatrists, the Royal College of Paediatrics and Child Health, the Royal College of Nursing, the Royal College of Occupational Therapy, the British Paediatric Allergy, Infection and Immunology Group, the Royal College of General Practitioners, and the British Association of Social Workers.
The PPSG is currently overseeing a number of projects to improve care and support available to young people with these conditions. These include the development of a clinical guideline (due to be published late in 2026), the publication of guidance for Local Authorities to improve support in education (also due to be published late in 2026), and the application for a nationwide surveillance study to find out how many children and young people in the UK may have PANS or PANDAS.
You can find out more about the work of the PPSG here.
Why isn’t IVIG offered in the UK?
IVIg (Intravenous Immunoglobulin) therapy involves administering immunoglobulins derived from pooled human blood plasma to patients. It is used to treat immune deficiencies, autoimmune diseases and inflammatory conditions. It is not routinely available as a treatment for PANS and PANDAS in the UK at present. It is a high-cost and limited resource in the NHS and it is prioritised for those conditions where there is strong, high-quality evidence for its use. Research into the use of IVIg for children and young people with PANS and PANDAS is evolving. Once sufficient evidence is published to support its use, the NHS clinical commissioning policy may be updated.
Are there any alternative options for treating PANS or PANDAS?
Certainly. Many parents pursue more holistic treatments, such as functional medicine, dietary measures and homeopathy. These can also be considered in conjunction with more traditional medical approaches and research in this area is ongoing.
What other support is available?
What role can CAHMS play?
CAMHS can provide therapeutic support for symptoms experienced by some children affected by PANS or PANDAS. A PANS or PANDAS‑informed CAMHS practitioner can provide tailored, trauma‑aware support for anxiety, obsessive compulsive symptoms, emotional dysregulation, and the wider impact on family life, while recognising that therapy cannot treat the underlying medical causes. CAMHS may also offer flexible approaches such as CBT or EMDR, help with safety planning during severe flares, and offer support for parents and siblings.
Where appropriate, CAMHS can also prescribe anti-anxiety medications, offer family therapy and provide in-patient support. Bear in mind that a multidisciplinary team effort is the best model for treating a child with PANS and PANDAS. This could involve CAMHS, in addition to other clinical services and medical treatment.
If you are a CAMHS professional, you may find it useful to read CAMHS leaflet to help you understand the conditions.
What financial support is available?
We know that many parents and carers of children with PANS or PANDAS find that they need to step back from work, or leave completely, to look after their children. We have worked with financial charities and money experts to understand what support is available, and how you can access it. Find this information here.
What support can PANS PANDAS UK offer?
Supporting someone with PANS or PANDAS can feel very isolating, especially while awareness about the conditions is low. Whilst we cannot provide one-to-one support for individuals, we strive to offer a wide range of support options, including providing up-to-date information and advice, and hosting safe spaces for parents, carers and young people. Our support includes:
- Expert-led webinars and presentations covering topics including trauma management, therapeutic support, parenting strategies, navigating sensory needs, EHCPS, neurodivergence, safeguarding and financial support.
You can also find lots more information and support throughout this website. Visit our ‘Support and Resources’ section for lots more information to help you understand the conditions and how best to get support.
Another way we support families is by helping to improve awareness and understanding amongst the professionals you may meet on your PANS or PANDAS journey:
What support is there for parents and carers?
Many parents and carers affected by PANS or PANDAS find it both very informative and really reassuring to be in contact with other families in similar positions.
The PANS PANDAS UK Support Group on Facebook is an excellent forum for this. There is a wealth of information, support, and understanding from the many members of this group, which will help you feel less alone. The search bar at the top of the feed is an excellent place to start looking for specific information. We also provide regular online support chats and regional in-person support groups.
Feeling informed about the conditions can help parents and carers too. Our collection of resources for families and carers contains information and support to help you, your child, and your family.
What support is available for young people?
Resources for young people
Living with PANS or PANDAS, or supporting a friend or sibling with one of these conditions, can be really challenging. Our dedicated youth space is full of resources, information and different ways to find support. We recently collaborated with children and young people to make a comic and sticker set to help support conversations around PANS, PANDAS and their own experiences.
Our Youth Board
Our Youth Board is home to a group of children and young people from across the UK, aged between 8 and 25 years old, who work closely with PANS PANDAS UK to drive for positive change for other young people and families affected by PANS and PANDAS. With online meetings every six weeks, and a dedicated online platform, children and young people can find support amongst friends and PANS PANDAS UK team members.
Sharing lived experience
Many of the young people we work with have told us how helpful it can be to hear from other young people who are experiencing similar challenges. Our collection of real stories features interviews, poems and stories by young people who are affected by PANS and PANDAS.
What support is available for adults with the conditions?
Unfortunately, diagnosis and treatment for PANS and PANDAS remain challenging in the UK, particularly for adults. This is something we are approaching as a charity by increasing awareness, and ensuring that the experience of adults living with PANS and PANDAS are included in all our conversations with policy makers and clinical professionals. While we work on producing adult-specific resources, support for adults is available via our partner organisation, EXPAND.
EXPANDs’ resources for affected adults include:
- Information about adult patient categories
- International Facebook support group
- Advocacy organisations
- Webinars
- Research journal articles
- Articles and blogs about adult experiences
How can I help others understand PANS and PANDAS?
How do I explain PANS or PANDAS to my child?
This very much depends on the age of your child. Ideally, keep it simple to begin with and ensure that they understand that it is not their fault and that it is possible for them to get better.
Our brilliant Youth Board have created a comic specifically aimed at young people, designed in a way which makes them feel seen
Our ‘Ask the experts’ interview contains messages from practitioners written specifically for young people, answering their questions about PANS and PANDAS.
You can also find information specifically designed for children and young people about PANS and PANDAS in the ‘resources for young people’ section of our website, including this amazing teen-to-teen leaflet created by Avilee, 17, to help teenagers understand and talk about the conditions.
How can I help other people understand the conditions?
Our collection of resources for families and carers contains information and support to help everyone understand PANS and PANDAS. We also offer specific resources for young people, healthcare professionals and education teams, as well as free training opportunties.
What should I do if I face a safeguarding concern?
What do I do if a safeguarding referral or FII allegation has been made?
We know that some UK families with children who have PANS and PANDAS may find themselves subject to safeguarding referrals or allegations of Fabricated or Induced Illness (FII).
This webinar, produced for us by Sunshine Support, explores ways to advocate for your child, how to communicate clearly and safely with professionals, and how to navigate FII investigations.
Our PANS, PANDAS and FII guide can be shared with any social work, healthcare or education professionals that you are in contact with.
Can PANS or PANDAS impact schooling and education?
What impact can PANS and PANDAS have on my child’s education?
Our understanding of PANS and PANDAS is still developing, and we do not yet fully know how repeated flares may affect children and young people over time in their education. What we do see is that each flare can bring challenges that may influence learning, wellbeing, and confidence in ways that build up and change the support a child or young person needs.
Because no single resource can capture every possibility, it remains essential for families, schools, and health professionals to work together, share information, and adapt support as both the child’s and young person’s presentation, and the wider evidence base, continue to evolve. This flexible, collaborative approach helps ensure every child and young person feels understood and supported.
Visit our Education FAQs to find information and resources for parents and carers, and for schools and educational professionals.
Have more questions?
If your question is not here, or you want to ask something about the answers given, please don’t hesitate to contact us at info@panspandasuk.org.
