PANDAS PANS The UK Experience Dr Tim Ubhi

PANDAS & PANS The UK Experience Dr Tim Ubhi October 2019 The Children's e-Hospital

“Disturbances of the moral sense, manifested frequently in a strange perverseness, great irritability of temper with emotional outbreaks” “a frequent complaint heard from the mother is that the character of the child is completely changed” “odd and meaningless acts” “So striking may those features be, that there are many instances on record in which the bodily trouble has been entirely overlooked, and the patient has been committed to an asylum” Sir William Osler, 1894 The Children's e-Hospital www. e-hospital. co. uk

Challenges in the UK • Knowledge amongst the medical profession • US treatment pathways • Parent groups • Political landscape • Economical factors • Lack of IVIG • Professional risk • Child protection & Safeguarding The Children's e-Hospital www. e-hospital. co. uk

Rheumatology General Practice Immunology PANDAS & PANS Psychiatry Paediatrics Neurology The Children's e-Hospital www. e-hospital. co. uk

2018 Survey

Research & Audit Education Events Parents Groups Physicians Network First UK Protocol September 2018 Engage with Royal Colleges PR Campaign NHS clinics The Children's e-Hospital www. e-hospital. co. uk NICE Guidelines Standardised Care

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Sub-group Feature I Classical PANDAS IA Misophonia IB POTS IC Eating disorder II Allergy III Coeliac Disease IV Rheumatoid Disease V Mycoplasma VI PANS VII Immune Mediated Behavioural Change The Children's e-Hospital www. e-hospital. co. uk

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Treatment Prophylaxis The Children's e-Hospital www. e-hospital. co. uk

Some response Good response The Children's e-Hospital www. e-hospital. co. uk

Tics Streptococcal Infection OCD Caudate Nucleus Lentiform Nucleus Amygdala Misophonia Insula Claustrum POTS Enuresis Autism Eating Disorder

“So striking may those features be, that there are many instances on record in which the bodily trouble has been entirely overlooked, and the patient has been committed to an asylum” Sir William Osler, 1894 “ There are many cases where we have ignored a physical explanation for a child’s symptoms because we have been too ready to diagnose them with autism or psychiatric disease ” Tim Ubhi, 2019 The Children's e-Hospital www. e-hospital. co. uk

The Children's e-Hospital www. e-hospital. co. uk