Allison
Take your son to a Children's Hospital if you haven't already. A few months ago Child's or Parents Magazine listed the top 10 children's Hospitals in the US. Find one close by and make arrangements to meet with someone there. Your childs physician can refer you and speed up the process. These doctors deal exclusively with children and the "weird" things that can happen to them. My son has been going to MUSC in Charleston, SC for 4 months now, and although he isn't "cured", he has been treated wonderfully. He has a blood disorder that causes his blood counts to bottom out - still no known reason. But they treat him with an eye on his future and with a great deal of concern. Good luck to you. Allie