Thread by @SHughesDr

This case report is of interest for a number of reasons…..Case report: Varicella associated neuropsychiatric syndrome (VANS) in ... sciencedirect.com/science/articl… 1/n @PandasPans @ASPIREpans @PANDASPPN

A) the children present with a #PANS (paediatric autoimmune neuropsychiatric syndrome) presentation. But the authors have created yet another new term “VANS”, presumably to avoid the controversies surrounding PANS 2/n

B) the subacute/acute onset of 3-6 weeks. Many parents are told their child can’t have PANS because onset took longer than 3 days - which has become the default definition of “acute onset”. Note that endres et al 2022 defined acute onset as <3 months 3/n

C) the two children received CSF testing / PET scans - something that most children presenting with these kind of symptoms won’t ever receive on the NHS (these case studies are not within NHS) 4/n

D) seronegative AE was concluded, but due to their symptomatic presentation immunomodulating therapies were still trailed, successfully 5/n

E) “delusional” thoughts - about harm befalling self, we’re categorised under psychotic symptoms. Intrusive thoughts OCD include thoughts about coming to harm or others coming to harm - yet these are usually filed under OCD and not psychotic symptoms 6/n

These case studies are triggering to me. My sons last, severe, #PANS flare was triggered by his brother bringing chicken pox home from preschool. He ticked the AE boxes, like these kids, but he had no testing, was accused of being undiagnosed autistic & abandoned by the NHS 7/n

Private immunotherapies later - he recovered from that chicken pox flare, but the trauma of 3 years of failure by the NHS has left scars (on him and his parents), and to the authors of this paper - thank you for publishing these case studies, but… 8/n

Please stop avoiding the term #PANS - there are hundreds (probably thousands) of kids who present with seronegative AE, but who don’t get the testing and treatment these kids got because of the public silence that the doctors who treat #PANS operate within. 9/n