The other thing I would recommend is, and it seems that you are doing this already Sully, is do as much research as you can. Not so much in the doom and gloom as mentioned above, but into programs and doctors who understand this condition. My daughter's primary care doctor (who is wonderful by the way), had never treated this condition, and the neurologists local to us were not well versed in it either. We self-referred to the program that we are in.