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Frequently Asked Questions

All you need to know about PANS and PANDAS

On this page, you will find answers to some of the questions we get asked about PANS and PANDAS most often.

What is OCD?

Obsessive compulsive disorder (OCD) 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 may include any of the following, or other obsessions/ compulsions:

  • Contamination-related obsessions and compulsions (eg. excessive washing)
  • Obsessions about harm coming to yourself or others
  • Sexual or religious obsessions
  • Compulsions that involve repetitive behaviour
  • ‘Just right’ obsessions (eg. a need for symmetry and exactness)
  • Ordering/arranging compulsions
  • Counting compulsions
  • Checking obsessions or compulsions
  • Excessive reassurance seeking
  • Need to touch, tap or rub
  • Intrusive images, words, music or nonsense sounds
  • Ritualised eating behaviours
  • Mental compulsions (ie. compulsions performed ‘in the mind’ rather than physically)

Is it possible to recover from PANS/PANDAS?

If identified and treated early, it is possible to make a full recovery from PANS/PANDAS. However, some people may not respond as well or as quickly to treatment, particularly if treatment starts later.

Why do some children get PANDAS after a Group 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, 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.

 

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.

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.

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”. 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 they have yet to be updated to reflect this.

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 or PANDAS?

No. A diagnosis of PANDAS requires the presence of obsessive-compulsive disorder OR tic 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).

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.

Research has shown that, when given appropriate anti-microbial and/or immunological treatment, PANS and PANDAS patients can experience complete symptom resolution, or a dramatic reduction in symptoms.

Why is there no NHS page for PANS/PANDAS?

Currently, both NICE and SIGN say there is not enough research to produce formal medical guidelines for PANS and PANDAS in the UK. Academic science follows strict standards and, although ongoing research is promising, conclusions cannot be made until a large amount of high-quality evidence has been published.

This does not mean that the NHS does not recognise PANS and PANDAS and it does offer support for people living with the conditions, although there is still some variation in what is offered across the country. The NHS is actively working with PANS PANDAS UK to improve the diagnosis, treatment and support offered to people with PANS and PANDAS.

For further information about our ongoing work to implement proper support and treatment for all children, young people and adults affected by PANS and PANDAS, please click here.

How do I get help?

If you suspect that your child may have PANS/PANDAS, please visit your GP. You may find it helpful to take some notes of your child’s symptoms and of any recent illnesses. It may also be helpful to print off the PANS PANDAS UK GP information leaflet and give a copy to your GP if they are not aware of PANS/PANDAS.

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.

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.

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.

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.

What treatment or testing might we ask the GP for?

Please visit our GP leaflet for details of appropriate tests and treatments.

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.

OCD often benefits from CBT or counselling so the GP may wish to refer to CAMHS as well as a paediatrician.

The recommendations for best-treating PANS/PANDAS are:

  • Three-fold- anti-microbial treatment
  • Immune modulatory treatment
  • 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.

What does a diagnosis of PANS or PANDAS mean for my child’s 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?

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.

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.

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. You can also find some information specifically designed for children and young people about PANS and PANDAS in the Youth section of this website.

How can I explain this to school/friends/family?

Again, keep it simple, and point them in the direction of the information available here, if they seek further information.

 

What 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 a multidisciplinary team effort is the best model for treating a child with PANS and PANDAS.

What support is out there for parents and carers?

Beyond the usual support network of friends and family, many PANS and PANDAS families 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 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.

There are regular online support meetings for parents and carers, details of which are here. In addition, you can find details of forthcoming regional support meetings where you can meet other PANS/PANDAS parents and carers in your area here.

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Glossary

  • 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
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control