My daughter Aurora had her first seizure 11 hours after her 2 month vaccines. She continued to seize for 3 weeks until she had an intercranial bleed. This bleed left a scar in my daughters brain (in her basal ganglia). Because of this scar, my daughter developed intractable Epilepsy. She had tried Phenobarbital, Tegretol, Keppra, Topomax, Depakote, and was being admitted to the hospital every other day for Status and Cluster seizures. She was having up to 40 visible seizures a day, and hundreds of Aura's. We watched her life fade away in front of our eyes!
It wasnt a hard decision, as I sat in the ER with Aurora after she had gone into a cluster of 14 seizures in 2 hours, and had to be given IV Ativan (Which makes her hallucinate) that we would be putting her on the Ketogenic Diet. I couldn't fathom another drug to try... what side effects would come from it next? She was initiated on the diet 1 year ago. When she started the diet she instantly stopped having seizures and went 30 days with no seizures. And then she started seizing every 2 weeks. We learned that in our hospital where they were doing the diet, that they were not doing it correctly. So we switched to a Children s Hospital and reinitialized the diet correctly. My daughter is now almost 6 months SEIZURE FREE. We NEVER imagined this day would come! And now they are talking about possibly weaning down on some of the seizure medication she is on, since she is at max dose with Keppra and Depakote.
The only regret I have is not doing the diet after the second failed med. I was told it was too hard to do, that every parent quits it... I just wish that it was an option given so easily as a medication. This diet has given my daughter her life back. We havent been to the hospital for a seizure in 1 year! I thought I was going to lose my only daughter, my baby girl... and the Ketogenic Diet has given her a chance at life!