hi there, I am not sure if my experience can shed any light on your sons' suffering but it certainly is ringing some bells with me. I am a 50 year old diagnosed with Behcet's Syndrome but unbelievably waited all of my life for a diagnosis with some pretty hideous symptoms going on in childhood too.

The problem with Behcet's is there is no blood test for it and a lot of doctors either don't seem to know about it or don't consider it because they mistakenly think you have to be of a certain ethnic background to get it which is wrong.

Anyway, it doesn't particularly sound like Behcet's because you don't mention ulcers either in the mouth or the genital area which I feel sure you would have. However, Behcet's is only one of many different types of vasculitis which have overlapping symptoms. I've just been today to see a neuro to rule out neuro Behcet's which is where the disease specifically causes damage to the brain in some way. Thankfully I don't have that but there are a lot of neuro symptoms with Behcet's and other forms of vasculitis and it can affect the brain and central nervous system producing the kind of symptoms your child has.

I am not certain that lying down is exacerbating his problem - he may have anxiety about being left on his own at night with these sorts of symptoms. I certainly developed night terrors as a child because of the complex migraine I suffer from which is sparked by my illness. The effects are horrendous and many times I thought I would die.

I urge you to try to get an opinion from a specialist specifically in vasculitis though also possibly an immunologist could help you. For a variety of reasons a neuro probably wouldn't be able to diagnose your sons disorder if it is related to a form of vasculitis. And even if you suggest what I've told you he;ll probably not respond well to it though you never know. I think a diagnosis when young is so important because at least when you're a child and you get all these types of symptoms, the medics are much more sympathetic than when you get older and they try to tell you it's all in your head. Please get in touch if you have any questions about what I am saying. I'm happy to elaborate on any of what I've told you about my own illness.