anyones child have Aicardi Syndrome(rare seizure disorder)?

[Escoville01]

My daughter is now 2 yrs old and was diagnosed with Aicardi Syndrome when  she turned 3 months old. SHe has always had daily seizures. I'm wondering what medicines others had tried to control Seizures. She has been on quite a fe win the past(ex.keppra, phenobarbitol, topamax, trileptal, dilantin, and others.) However the 2 she is on currently(Topamax and Trileptal) have seemed to worked the best for her overall. Lately her seizures have been getting worse again and I have thought of asking the Neurologist to change her meds but I am not sure which ones to suggest. If anyone could tell me what meds have worked well for their children that would be great. Thanks

[askew]

My DD had Infantile Spasms and she was on Vigabitrin for them. The controlled them completely within 24 hours. They did cause major hypotonia as a side effect as well as constipation. 

[Cswitals]

yes. My daughter has aicardi syndrome. She is 8 months old. For the best advice from parents living with this disease join the parent list- serv at www.aicardisyndrome.org. We are also trying various medications. The seizures are very hard to control.