Please click on the underlined words to view a definition.
First things first…
What is PANS? What is PANDAS?
PANS is an acronym for Paediatric Acute-onset Neuropsychiatric Syndrome.
PANS is a neuropsychiatric condition which is triggered by a misdirected immune response to an unknown trigger causing inflammation in the brain, leading to both physical and psychiatric symptoms. Despite its name, PANS can affect any individual at any age.
PANS is a clinical diagnosis and a diagnosis of exclusion. There is currently no specific test which will prove or disprove the condition and a diagnosis is to be made based on the analysis of the patient’s medical history, a review of their current symptoms and a physical examination. Lab work and additional testing can be ordered to identify an infectious trigger, rule out other diagnoses, and inform treatment plans.
PANDAS is an acronym for Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections.
PANDAS is a subset of PANS. Similarly, it is a neuropsychiatric condition which is triggered by a misdirected immune response to a Group A Streptococcal (GAS) infection which disrupts a child’s normal neurologic activity. GAS infections can occur in many parts of the body, not just the throat and can result in the inflammation of a child’s brain. Symptoms can appear whilst the infection is still present or several months later.
PANDAS usually starts with an acute onset of obsessive-compulsive disorder and/or tics, particularly multiple, complex or unusual tics. PANDAS symptoms can then appear to wax and wane with the child experiencing flares periodically, following illness or periods of stress.
The child is usually between the ages of 3 and puberty when first symptoms occur and usually appear following a streptococcal infection such as Sinusitis, Ear infections or Scarlet Fever. In some cases children can carry the streptococcus bacteria without showing signs of illness.
What causes PANS and PANDAS?
Both PANS and PANDAS occur due to a misdirected immune response to common infections, targeting the brain. With PANDAS the infection is identified as group A Strep, whereas with PANS the initial trigger for the misdirected immune response may be ‘Walking pneumonia’ (Mycoplasma pneumoniae), the flu (Influenza H1N1, Glandular Fever (Epstein-Barr virus), Lyme disease (from an infected tick bite), Chickenpox, bacterial infection (such as Bartonella) or Toxin exposure (such as exposure to industrial pollutants).
PANS and PANDAS can include a variety of other symptoms such as (but not limited to), anxiety (especially separation anxiety), loss of previously gained skills, psychosis, intrusive thoughts, irritability, hyperactivity, sleep disturbances, mood swings and urinary problems.
What is an encephalopathy? Is PANS PANDAS the same as Autoimmune Encephalitis?
An encephalopathy is a disease that affects the functioning of the brain. PANS and PANDAS are encephalopathies.
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. Treatments for the two conditions have many similarities.
Why do some children get PANDAS after a Group A strep infection while others do not?
Science has not yet answered this question. Possible hypotheses include the following:
Strain Differences: There are over 150 strains of Group A streptococci (GAS) and only 10–12 of these cause acute rheumatic fever and Sydenham chorea, the medical model of PANDAS. It is reasonable to hypothesize that only certain strains of GAS trigger symptoms of PANDAS. Geographic clusters of new cases of PANDAS have been reported, which would give credence to this possibility.
Genetic Vulnerability: Defects in clearing Group A strep, resolving inflammation after group A strep, differences in neurocircuitry, cytokine receptors in the brain, or abnormal expression of neuro-signalling molecules/receptors during infection are all hypothesized to play a role in neuroimmune disorders including PANS and PANDAS. No genetic marker has been determined as of today.
Location of Strep Infection: Strep infections typically occur in the throat, tonsils, and anus, and each area should be examined and swabbed for culture. Although “strep throat” infections are the most common trigger, PANDAS has been reported to occur in association with perianal strep infections. Additional sites may be involved; for example, animal research suggests that strep in the nasal cavity may enter or influence neuroimmune cells along the olfactory nerve, providing access to the brain through the third ventricle.
How many children have been diagnosed in the UK so far?
Currently, we simply do not have enough information to answer this question. The PANS PANDAS UK charity hopes to carry out a surveillance study in order to ascertain a clearer picture of the prevalence of these conditions within the UK.
How do I know if I am barking up the right tree?
Is there a blood test that tells you if you child has PANS/PANDAS?
No, there is no single blood test for PANS or PANDAS. Common bloodwork used when working up a suspected case includes looking for possible infectious triggers, immune system function, and levels of key micronutrients.
An antibody to PANDAS has been identified, however a suitable test has not yet been produced for use by the medical profession.
So, how are PANS and PANDAS diagnosed?
PANS and PANDAS both require a clinical diagnosis and as mentioned above, there are no specific tests which will prove or disprove the condition. The diagnostic criteria for PANS and PANDAS differ slightly and are outlined in detail below:
PANS Diagnostic Criteria
In order for a diagnosis to be made for PANS, presentation of the following symptoms must occur:
An abrupt, acute, dramatic onset (usually within 24-48 hours) of obsessive compulsive disorder (OCD) or severely restricted food intake along with two or more of the following symptoms which are not better explained by a known neurologic or medical disorder.
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. Parents frequently report dilated pupils when their child is in a PANS flare.
PANDAS Diagnostic Criteria
PANDAS is a subset of PANS.
Usually starting with an acute onset of obsessive compulsive disorder and/or tics, particularly multiple, complex or unusual tics. PANDAS symptoms can then appear to wax and wane with the child experiencing flares periodically, following illness or periods of stress.
In addition to OCD and/or tics, children can also experience a range of symptoms similar to those listed under the PANS diagnostic criteria but they are not necessary for a diagnosis. Parents also frequently report dilated pupils when their child is in a PANDAS flare.
What is a clinical diagnosis?
A clinical diagnosis is one made based on specific signs and symptoms observed by a medical provider rather than on lab tests or biomarkers. Both PANS and PANDAS are clinical diagnoses based on a set of specific criteria. They are also diagnoses of exclusion, meaning that a patient should be fully worked up for other known illnesses or diseases that could cause the observed symptoms. The workup should rule those other illnesses in or out.
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. Given that PANS awareness is relatively low compared to other childhood disorders like ADHD or ASD, an acute onset can be missed.
What if my child didn’t have an ‘acute onset’? Does that mean s/he doesn’t have PANS/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 “typical” or “developmentally appropriate”.
My child has never had a positive strep test. Does that mean s/he doesn’t have PANDAS?
Not necessarily. Many children with PANDAS don’t 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 anus. If children aren’t swabbed thoroughly or in the right places, an infection might be missed.
In addition to the infection not always showing up in the way parents and providers expect, rapid strep tests miss 15%-20% of active infections and blood titers (ASO and Anti-DNASE B) tests have a false negative rate of nearly 40%
I don’t remember any illness prior to the onset of PANS symptoms, does that mean it can’t be PANS?
No, it is possible for the illness to have occurred in the past, or for children not to show normal symptoms of an illness when they have PANS.
My child doesn’t have any tics, does that mean it can’t be PANS PANDAS?
No, a diagnosis of PANDAS requires the presence of obsessive-compulsive disorder OR tics and a diagnosis of PANS requires the presence of obsessive-compulsive disorder OR eating restrictions. (In the case of PANS other symptoms must be present - see the diagnostic criteria for more information).
Can my child’s illness still be PANS/PANDAS if my child had been ill for years before we discovered it?
Absolutely. Unfortunately, it is quite common that years will pass between onset of symptoms and diagnosis as PANS and PANDAS are not well-known by GPs or by CAMHS in the UK.
My child has been diagnosed with Autism Spectrum Disorder. Can s/he still have PANS/PANDAS?
Yes. Some PANS experts believe that children with ASD might be at greater risk of developing PANS. If a child has a sudden onset or sudden worsening of PANS symptoms, they should be given a full diagnostic workup before diagnosing the child with Autism or assuming these symptoms are only due to Autism.
All too often, children and adults with PANS and PANDAS are misdiagnosed as having a psychiatric illness, or developmental condition such as Tourette’s syndrome or Autism in the UK.
Because of this they may be treated solely with psychotropic drugs to manage their symptoms.
Unfortunately, for PANS and PANDAS patients this does not address the root cause of the symptoms and can actually result in greater harm and long term damage.
However repeatedly, research has shown that when given appropriate anti-microbial and/or immunological treatment, PANS and PANDAS patients can experience complete symptom resolution, or their symptoms are dramatically reduced.
OK, so PANS or PANDAS sounds very similar to what my child is experiencing. Where do I go from here?
Who should we see first, and what should we say?
First appointments can be nerve-wracking. Take a deep breath and remember that you know your child best, and that you also know what is normal or out of the ordinary for them in terms of behaviour and health.
Make an appointment with your GP (ideally the one who you feel most at ease with). Explain the symptoms your child is experiencing and emphasise what has changed. Print a copy of the GP Information Leaflet from the website and offer this to your GP. If he/she appears open minded and willing/confident to help, refer them to the PPUK charity and website. If they are willing to help but unsure how to do so, again refer them to the charity who can offer guidance and refer them to one of the members of the PPN for advice. Alternatively you could ask them for a referral to someone who has experience in treating immune-mediated disease.
My GP will only refer my child to CAMHS. What should I do?
Politely remind them that you believe your child has an immune-mediated disease and, as such, requires the medical expertise of a paediatrician or paediatric neurologist to diagnose and advise appropriate treatment. Psycho-therapeutic interventions will not address the root cause of the symptoms, although it may prove useful at a later stage to help children with dealing with residual behaviours and/or trauma.
My doctor’s response to my description of the change in my child is that s/he wants me to go to a parenting class. Does that mean that the changes in behaviour are my fault?
No! In the UK, many GPs are unfamiliar with PANS and PANDAS and are therefore at a loss of how to explain what has occurred to alter a child’s behaviour so dramatically. Parenting classes are offered as a means to help parents cope better with their children’s behaviour, however this is not going to alter the root cause of the changes, if PANS or PANDAS are the issue. Remind your GP that you believe that your child has an immune-mediated condition and, as such, requires consideration by a medical expert well-versed in such conditions.
My GP is onboard with referring my child. How do I know how to find a consultant who is aware of PANS/PANDAS?
The PPUK website has a list of doctors (most likely paediatricians, neurologists or child psychiatrists) who are PP friendly in the UK. If you search their names on the PPUK Facebook support group, you will discover other parents’ views on these doctors and be able to narrow down who you think is the best fit for your child from there. Unfortunately, there are currently only a few doctors treating PP on the NHS in the UK and therefore they tend to have long waiting lists. It is possible to consult some of them privately, and some of them are covered by private health insurance. Some will consult via Zoom, Skype or telephone should distance be a factor.
How can I best prepare for my child’s appointment with a GP/consultant?
Prepare a timeline of how your child’s symptoms presented themselves. Any infections or past illnesses are worth noting down, particularly if they were followed by a change in behaviour. Write a list of the symptoms you have seen; some parents like to take video footage to demonstrate their concerns. Sometimes it is useful if you can e mail this information to the consultant in advance so your appointment time isn’t eaten up by going over this material.
Write down any questions you have, and consider what it is you want to achieve by the end of the appointment (i.e. a diagnosis, a clear treatment plan, tests to be run, an idea of what to expect in future, how you can contact the consultant if things change etc.).
Consider taking someone else with you to act as moral support, and to help take notes if necessary.
How best can I track/record the course of his/her symptoms?
This comes down to individual preference. There are apps available if you prefer to keep track digitally, or else a good old-fashioned journal/diary will serve the purpose too. Ideally, keep track of symptoms (physical and psychological), medications, appointments and any illnesses on a daily basis. This will prove invaluable in helping you and your specialists identify what is going on, and what helps or hinders.
I really want to get to the bottom of what is going on with my child. What are the testing and treatment options available to us?
What might we ask the GP for?
Appropriate first stage tests that may be considered
• Throat, nasopharyngeal or peri-anal swab to rule out strep
• Initial bloods: U+E, LFT, FBC, ASOT, Anti-Dnase B Titres, IgG, IgA, IgM, ANA, Vit D3, Free T3, Free T4, TSH
• Tests to rule out other infections based upon medical and family history
First stage treatments that may be considered
Treatment should be initiated immediately – do not wait for test results
Initial Antimicrobial therapy. One of the following antibiotics should be given for 14 days: Penicillin V, Amoxicillin, Co-amoxiclav, Cephalexin, Clindamycin, Azithromycin, Clarithromycin
The GP should follow up towards the end of this course and see what effect the treatment has had. They should then consider whether to continue the antibiotic treatment or lower it to a preventative dose.
A referral to a paediatrician (ideally with experience of PANS/PANDAS) should be made for ongoing treatment. This can be done privately or via the NHS.
The recommendations for best treating PANS/PANDAS are three-fold- anti-microbial treatment, immune-modulatory treatment and neuro-psychiatric treatment.
Are there any alternative options for treating PANS/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. As many of members of our support group prefer to use functional medicine over conventional medicine. PANS PANDAS UK has decided to create a PANS Functional Network (PFN UK) to run alongside the PPN UK in order to share knowledge and experience.
Can the brain inflammation from PANS/PANDAS be seen on a brain scan?
Unfortunately not. Most health professionals treating PANS/PANDAS rely upon symptoms and other tests to ascertain what is happening physically within the body.
Supposing my child gets a diagnosis of PANS/PANDAS… what does that mean for our family in the future?
Are PANS/PANDAS life-threatening?
PANS/PANDAS can become life threatening due to avoidant restrictive food intake disorder (ARFID)-related food restriction and due to suicidal behaviour. However, with appropriate diagnosis and treatment, the outlook is positive.
Can PANS/PANDAS be cured? Will my child ever get better?
I think the most important thing for PANS/PANDAS families to hold on to is that, absolutely yes it can be cured. It may not be simple nor straightforward, and may require a multi-disciplinary approach, however it is definitely possible to help your child feel better and live a full and fulfilling life.
What does it mean to say that a disease is relapsing/remitting?
A relapsing-remitting disorder is when the symptoms are worse some of the time (relapse) and are improved or gone at other times (remitting). Being in remission is different from being cured. Once a patient has PANS, even during an extended time of remission, parents and medical providers will need to stay vigilant for a reoccurrence of symptoms.
Families of those with PANS and PANDAS talk of ‘flares’. These are effectively times when the child relapses and experiences an exacerbation of symptoms. The causes of a flare 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.
Will one course of antibiotics cure it?
It may, if it is caught early after symptom onset, however as PANS and PANDAS are known as relapsing-remitting disorders, it is important for families to understand that it is likely to be a slow and bumpy path to recovery. Moreover, whilst one antibiotic may work for one child, it may not for another. It is often a case of trial and error before the appropriate medication (and length of treatment) is found.
It has taken far too long to get a diagnosis and to begin appropriate treatment. Does this mean my child will not get such good results?
Not necessarily. Due to the nature of these conditions, and the lack of understanding them in the UK, it often takes months or years for children to receive a diagnosis and begin treatment and yet they still are able to see huge improvements.
Help! All of this seems overwhelming… What can I do? What support is there?
Which books should I read to educate myself?
Happily, there is an ever-growing body of literature which now exists where families and carers of those with PANS or PANDAS can access relevant information. A good starting place for this can be found at https://www.panspandasuk.org/resources.
How do I explain PANS/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 to make them better. The PPUK website plans to provide a children’s FAQ section in the coming weeks which may prove useful.
How can I explain this to school/friends/family?
Again, keep it simple to begin with, and point them in the direction of the information leaflets available at www.panspandasuk.org, if they seek further information.
What useful role can CAMHS play?
CAMHS are able to provide support for PANS/PANDAS families, in terms of talking therapies (such as CBT) to help children understand their anxieties and OCD symptoms. They are also able to prescribe anti-anxiety medications where appropriate.
Bear in mind that CAMHS alone is unlikely to resolve the issues facing a child with PANS or PANDAS.
What support is out there for parents and carers?
Beyond the usual support network of friends and family, many PANS/PANDAS families find it both very informative and really reassuring to be in contact with other families in similar positions.
The PPUK Support Group on Facebook is an excellent forum for this. There is a wealth of information and 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.
In addition you can e-mail the charity to find out details of forthcoming regional support meetings where you can meet other PANS/PANDAS parents and carers in your area.
OK, so I know what I am doing with regards to the medical side of things, but school is still a real issue. What can I do?
If medical professionals are hard to convince about PANS and PANDAS, how on earth can I expect school to listen?
A good starting point is to print off the PANS PANDAS UK charity information leaflet for schools. Provide a copy of this to your child’s class teacher and to the SENCo, and ask that it be disseminated amongst any staff who may come into contact with your child.
Request a meeting with the SENCo and explain how having PANS or PANDAS makes school challenging for your child. Think in advance about what you would like to be put in place to make life easier for your child, and ask the SENCo what the school can suggest. Simple measures like toilet passes, a ‘calm zone’, assistance with attendance issues can all help to reduce the stress your child may experience. Other ideas are reduced timetable and key workers who they can talk to when the need arises. Equally, asking for enhanced means of communication between school and home can make everyone’s life easier.
PANS PANDAS UK is in the process of developing CPD Accredited training for schools, so if your school is interested in attending a short training course please ask them to email firstname.lastname@example.org for more information.
My child’s teacher says they are fine at school… does this mean it can’t be PANS or PANDAS?
Many parents report their PANS/PANDAS children ‘masking’ their symptoms whilst at school, or away from their home environment. This, however, does not mean that they do not have PANS or PANDAS. In fact, it is very common for children with PP to be able to hide their outward symptoms for periods of time, and then to have an explosion of symptoms once they return to the place or people they feel most safe with. This is a known coping strategy, as children are aware that their tics or compulsive behaviours are different to their peers and seek to hide them in order to fit in.
In addition to this, even the most observant teacher is unlikely to be able to spot the more subtle symptoms and ‘tells’ that a child with PP may display.
In summary, school assuring you that your child is ‘fine’, is not enough for you to doubt the validity of a PANS/PANDAS diagnosis. Remember, you know your child best, and you also know how they are when they are not at school. It is important to communicate to school that it is possible, although likely taxing, for a child with PP to mask their symptoms at school, but that this doesn’t mean that they are ‘fine’.
Does my child need an EHCP for support measures to be put in place?
That varies greatly depending on the individual and upon the school. Some children with PANS or PANDAS are able to access suitable support just by having a Pupil Profile in place, which details what school might expect, and what you, in turn, expect of them. However, other children may require more extensive support which may be better provided for if there is an EHCP (and associated funding in place).
8. Why do I keep coming up against doctors who tell me PANS and PANDAS are ‘controversial’?
What is the situation like in the UK regarding acknowledgement of PANS and PANDAS?
PANS and PANDAS are little known and poorly treated in the UK, despite PANDAS being formally recognised by the World Health Organisation (ICD-11 code 8E4A.0) and accepted research identifying that as many as 1 in 200 children are likely to be impacted to a varying extent. Figures from a 2020 survey suggest that 95% of GP’s did not suggest PANS/PANDAS as a possible diagnosis and 47% of paediatricians had never heard of the conditions.
Why is there such a lack of recognition and such controversy?
In spite of the fact that PANDAS was first described by Susan Swedo over 20 years ago, some medical professionals continue to discount it, and by extension, PANS as real medical diagnoses. The medical community can be slow to accept change, even in the face of an increasing body of scientific research which supports the validity of the conditions.
Part of the problem has been symptoms of these diseases are often mistaken as psychiatric rather than bacterial or viral, because traditionally medics have treated the physical and the psychological as two completely separate entities. Other countries, such as the USA, have progressed further in acceptance and treatment of the conditions with specialist treatment centres springing up to provide a targeted and specialist service to children with PANS and PANDAS.
What is being done to rectify this situation in the UK?
PANS PANDAS UK is a Charity which was established by a dedicated and determined group of parents with children who are affected by PANS or PANDAS. PANS PANDAS UK was formed in order to raise awareness and understanding of these conditions amongst the general public and medical professionals.
The charity works closely with a network of Doctors called the PANS Physician’s Network UK (PPNUK) in order to ensure better diagnosis and early effective treatment for those suffering with these little understood, but life changing conditions. It is the mission of PANS PANDAS UK to ensure that these conditions are known about in every GP Surgery, every school and every hospital, so every child can receive an early diagnosis and effective treatment.
Moreover the charity has instigated an All Party Parliamentary Group (APPG) with the aim of using an integrated inquiry based approach against relevant legislation, policy and evidence base in order to reconcile the variation in the detection, diagnosis and provision of treatment of PANS and PANDAS in the UK. In essence the APPG seeks to gain support within the government in order to push through positive policy changes which will enable our children to have the same rights to effective and appropriate treatment as they would with any other recognised medical condition.
What can I do to help bring about change?
The PANS PANDAS UK charity welcomes the support of all those families whose children are affected by PANS or PANDAS. Simple measures that you can take to help the charity are to write to your MP, asking them to join the upcoming APPG (A template letter is available at https://www.panspandasuk.org/appg). The more MPs involved, the stronger the case will be.
Additionally, the charity seeks to raise funds for UK led research and clinical trials and would very much appreciate your support in this. More information is available on our website and on the Facebook Support Group.
ADHD – Attention Deficit Hyperactivity Disorder
AE – Auto-immune Encephalitis
ARFID – Avoidant Restrictive Food Intake Disorder
ASD – Autism Spectrum Disorder
CAMHS – Child and Adolescent Mental Health Service
CBT – Cognitive Behavioural Therapy
EHCP – Education, Health and Care Plan
GAS – Group A Streptococcal infection
OCD – Obsessive Compulsive Disorder
PP – PANS PANDAS
PPUK – PANS PANDAS UK
PPN – PANS Physicians Network
SENCo – Special Educational Needs Coordinator
Tic – Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control
‘Antibodies From Children With PANDAS Bind Specifically to Striatal Cholinergic Interneurons and Alter Their Activity’; Jian Xu, Ph.D., Rong-Jian Liu, Ph.D., Shaylyn Fahey, B.S., Luciana Frick, Ph.D., James Leckman, M.D., Ph.D., Flora Vaccarino, M.D., Ronald S. Duman, Ph.D., Kyle Williams, M.D., Ph.D., Susan Swedo, M.D., Christopher Pittenger, M.D., Ph.D. Published March 2020.