no, I haven't really done that. I was tested for XMRV at one point but it was before I knew my symptoms were IIH. I suspect I have HSV causing an intermittent Ramsay Hunt syndrome (ear pain) and tried Valtrex for awhile but didn't see much difference. I'm a lot better now since I had jaw surgery, I'm mostly in remission.
My son also has IIH, he is almost ten and as far as I can figure he's had this all his life. I'm convinced it has something to do with our jaw anatomy, since I got better with jaw surgery. we both have improved with treatment of our sleep apnea. has your son had orthodontia?
My son sees an osteopath for adjustments once a month. he is much better with this, it seems like it is doing something to improve CSF drainage. as he gets closer to his next treatment he will sometimes get headaches and his behavior will worsen. he has autism. when he was younger and had LPs his autism symptoms would almost go away for 2 days until the pressure re-accumulated.
we are gluten free because eating gluten gives us ICP symptoms.
definitely NO vitamin A! you could do beta carotene, but even so, high doses are not a great idea.
most docs don't understand this problem, even the ones who are treating it. many patients don't know what is wrong with them, and people end up with naturopaths. its a slippery slope. I had to pull myself off of it and focus on one problem at a time in allopathic medicine, do my own research and figure it all out myself. it sounds like you are doing a good job trying to take charge of his health care and look at it from all angles, and be his medical home. just don't get dragged too far down the naturopath angle because it stops making sense after awhile.