Jan
My heart goes out to you and your family. I am sorry that I do not know anything of your son's disoreder. A close friend of mine, has a multiple handicapped child with many symptoms but no diagnosis. She is now 5 years old and still without a diagnosis. She has had the best of medical care at Childrens Hospital in Philadelphia. I would only suggest that you take your son to a well known Childrens Hospital. I will keep you in my prayers. Good luck.