Hello,
This is my first post, and I'm really hoping you can help... my 5 yr old son has symptoms of PANDAS but here in London no one has heard of the condition.
My son developed multiple tics very suddenly on Christmas Eve, having been completely normal beforehand. Within 24 hours he was jerking his head, jumping, beating his chest and making facial grimaces. We took him to A&E (what you call ER in the US) where we spent most of Christmas day. They told us that all tests (including the strep antibodies) were normal, but a blood test showed abnormal overactive thyroid. Initially he was referred to an endocrinologist, but when they ran the blood test again 4 days later it was normal. He was then referred to a pediatric neurologist who diagnosed a Motor Tic Disorder and said we just have to wait and see how it develops. An MRI scan showed he also has 'Chiari malformation' but they think this is incidental and not linked to his tics. He is a very bright little boy who is normal in every other sense and doing well at school.
Over the last 4 months his tics have changed (throat clearing, sighing, finger clicking) but have gradually lessened to the point where they were no longer noticeable - just the odd jump now & again. But last Monday he came down with a sore throat and fever and the head jerking tic started up again, along with needing the toilet a lot & wetting himself during the day (something he'd never done before), and acute anxiety that his baby brother may choke or stick his finger in a plug socket.
Having read about PANDAS I took him to the GP and requested a throat swab. The doctor said his throat looked ok, but he did the swab anyway just to keep me happy, and prescribed a 6 day course of Amoxycillin as he had a fever. On Friday the doctor called me and said he was very surprised that the throat swab had come back positive for streptococcal throat infection, and he would need a longer 10 day course of antibiotics. When I asked him if it could be PANDAS he just said he'd never heard of it, and clearly thought I was a neurotic mum.
I am now pretty sure that the strep caused an exacerbation of his tics, but no one here in the UK believes me. I've tried googling and can't find a specialist who deals with PANDAS. I'm completely at my wits end. We are due to see the neurologist at the hospital again in 3 weeks time, but I know she'll just say wait & see.
Does anyone know where I might be able to get some more medical advice on PANDAS either in the UK, or elsewhere?
Sorry this has been such a long post, but I wanted to get all the history down in case anyone had similar experiences or any suggestions. Many thanks for reading!
Sam's Mummy
