Sorry to read this. I saw this video yesterday and wanted to share it with you:
http://www.youtube.com/watch?v=ecpa3jGR5Fo&feature=re...
Elaine Gottschall was the mother of a very sick daughter who had seizures and ulcerative colitis. She was referred by a friend of a friend to Dr. Sydney Haas, a pediatrician who was looking at gut issues in children (e.g. Celiac disease). He came up with a special diet that helped his patients and Elaine went back to school to get a degree in biochemistry, and then continued Dr. Haas' work after he died in 1964.
My daughter (7) has been diagnosed with multiple health issues since 18 months old. When I found the Specific Carbohydrate Diet, I started her on it despite being told by many doctors that it wouldn't do anything. Two years later, she's off all but one medication and is doing better. Still not 100% but I'm glad she's off the more risky medications.
Email me if you decide to try it and have questions. I can point you to some resources. It won't take the place initially of any medications your son needs to be on to get the seizures under control, but it is something you can try alongside traditional medication to see if you can help your son.
Saying prayers for your son. Hope you get answers very soon.