I am a mother of an almost two year old boy, Austin. He has had seizures for a full year now. My husband, son and I live in Port Moody, B.C. Austin started with simple partial seizures but once he went on Tegretol he developed myoclonic seizures which he has between 100-200 a day. We are on his fifth medication now but are remaining hopeful because we are being referred to a neurologist who leads the ketogenic diet at Children’s Hospital.
The medications have made him so dopey and he is very developmentally delayed, he doesn’t walk or talk yet. I have read Arlene’s book and I can relate to a lot of the circumstances and feelings she wrote about. This is a hard road to travel and I have to keep in mind that so many have it much worse.
Our son is pretty happy most of the time and we have a very supportive family. My mom and dad look after my son full-time so I can work and I know it has been very draining on them to see Austin suffer and not develop the way he should. I am relieved to read that we are not the only ones on this journey and I pray for all the children going through this as I pray for my son everyday. I will be reading all the entries about the ketogenic diet with great interest.
Thanks for listening,
Kim
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