I wanna say at The Cleveland Clinic, theres a doc i thought i remembered swho specialised in this. Might be worth a shot in the dar to look them up. They have an awesome epilepsy center up there, as well as a totally comprehensive metabolic center. If they cant figure out whats going, Id be surprised. With us, we knew in literally...ten minutes of meeting our doc. 12 years wrth of missed diagnoses and within ten minutes. He was shocked it had taken so long for anyone to see the bigger picture. They have awesome metabolic geneticists up there too.