Zach's seizures started at 3 months of age. He started with 3,20 min T/C seizures and came home on medication. I am sure we have the same story as most. We went down the list of medications adding this to that and taking this one away only to add something.
I can still remember when he was about 3 reading the book seizures and epilepsy in childhood and going and asking about the ketogenic diet only to be told, "Oh you do not want to that and beside it will not work for Zach".
Then when he was 4 the story broke on Date Line Charlie’s story. My phone was ringing off the hook. I think any one and everyone that knew us or even heard about Zach was calling. Did you see it!!! Dad and I talked about it and thought well we had already been told no and beside Zach doesn’t like to eat much already this would be a nightmare.
Ok lets give the meds 6 more months and see. Well we didn’t wait 6 months. About 3 months later Zach was so drug up and still having seizures and had ended up in the ER one night. Well the next day when his ped came in to see him he was beside him self and had my husband send home. ( he was in the air force at the time ) and set up a Er visit with his neuro.
So we asked once again about the diet and we were told YES we can try it. All I can say is I had a 4 year in pull-up that was so hyper he could not sit for one second run in to the hospital to start the diet and a child who no longer needed pulls-up when he walk not run out of the hospital. Once again we were stop by doctor nurse ect.. and ask what did you change!!! Zach stay seizure free for 6 months. He was able to come off all his medications and we only had one small seizure a month. This was heaven for us.
We stayed on the diet for 4 years and deiced to give us all a break. His seizures start to come back and once again started down the road with the VNS and the list of meds. We even went as far as surgery we still had seizures. By this time we had moved to many different states. I had been asking and asking about the diet once again and we didn’t had a center any where in town so after being told over and over again we would be getting one just hang on a little bit longer.
I went out and found a dietitian who really wanted to learn the ketogenic diet and than found the wonderful program The Charlie foundation was offering and brought all this to my sons doctor. We now have a ketogenic diet program and I have my son back !!