The Politics of PANS PANDAS

PANS PANDAS as a diagnosis has been gaining significant traction in the UK especially with the amazing work of a group of parents who set up the UK PANS PANDAS charity in 2017. Following the release of the UK PANS PANDAS Physicians Network Treatment Guidelines in 2018 there was a significant amount of progress made in raising awareness of this treatable condition and a large number of children benefitted from realtively simple and safe treatment that improved if not completely resolved the symptoms that they were experiencing. The group of doctors who came forward to help develop these guidelines came from prestigious institutions around the UK, including The Evelina Children’s Hospital in London, Alder Hey Children’s Hospital in Liverpool and Birmingham Children’s Hospital amongst others. The concept of a movement disorder resulting from a bacterial infection was not new to medicine, I refer in particular to Sydneham’s Chorea, a well established sequelae of rheumatic fever, where antibodies to streptococcus cross react with a part of the brain involved in movement control and cause abnormal movements and obsessive compulsive symptoms. It was Sue Swedo’s work into Sydenham chorea that led to the identification of a sub-group of patients, pre-pubertal children, who had a dramatic onset of tics and obsessive compulsive behaviour following a streptococcal infection. This group responded dramatically to anti-inflammatory and antibiotic treatment. Sue Swedo went on to coin the term PANDAS, Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. This sub-group of post streptococcal movement disorders has led to significant discussion amongst health care professionals in the UK and sometimes those discussions have not been very constructive. The practice of medicine in the UK is relatively conservative, particularly when compared with the US. There are also “established institutions” that have a vested interest in the whole concept of PANDAS or PANS. Quite often a child with sudden onset tics or OCD behaviours is labelled as having a “behavioural problem” or “autistic traits” or even “Tourette’s like”. The last of these is because technically you need to have symptoms for a minimum of 12 months to be given a diagnosis of Tourette’s. The pathway that a child with PANDAS goes down is very dependent on the speciality of the doctor that they first meet. What I mean by this is that a general practitioner may view a child with PANDAS differently to a paediatrician , a neurologist, an immunologist or indeed a psychiatrist. The investigations (if any) will differ between each speciality and here lies the problem. Another layer that should be considered is that many “experts” eg in autism or Tourette’s syndrome will have a point of view that has been moulded over decades of experience to fit their area of interest. It is not surprising therefore that they might not even entertain the idea of a new disease that could potentially explain the symptoms in a sub-group of their patient populations. We must however continue to encourage doctors from all medical specialities to have an open mind and to consider relatively simple treatments in a controlled and time limited way that may improve the symptoms that their patients are experiencing. If a child does have autism or Tourette’s syndrome then that is fine and the appropriate support should be put into place to help that child develop as normally as possible and to alleviate their symptoms. But, what if that child had PANDAS and was demonstrating symptoms that could be treated with a short course of antibiotics? Should we give the antibiotics or refer to psychiatry for treatment with psychotropics or refer to neurology for treatment with drugs such as clonidine or haloperidol. The first pillar of medicine is to do no harm, I look forward to hearing the thoughts of health professionals and parents alike.