Here We Go Again

We were getting a little nervous by Saturday evening that Will was too ketotic. We gave him 15 mls of apple juice hopping that would do the trick to get him eating again and not so sleepy. Unfortunately it didn't help. Will went to bed at his usual 7:30 bed time and we hoped we would have better luck in the morning.

A little after 10 p.m., Will woke up having a seizure. It lasted for about 3-4 minutes. Then he went back to sleep. Almost exactly an hour later he woke up with another one with about the same duration. When he woke up with another one around 1 a.m., we called Dr. Sharpe. When we didn't hear anything back from him, we made the decision to administer the rescue medicine if he had another one before the necessary time that we would normally give it, hoping that it would be enough to calm down his brain. At around 2:30 we went forward with our plan when Will had another seizure. The medicine stopped the seizure, and we hoped it would be the last. But it wasn't. About 2 hours later he had another, though not as violent as the previous ones or as long. This happened 2 more times before 9 on Sunday morning. We called Will's neurologist back around 7ish. He called back maybe 30 minutes later. He was calling from out of town and wherever he was staying had really poor reception so he hadn't been able to call us back in the middle of the night. He had found a pay phone to return our call that morning and apologized profusely and then gave us some ideas to try with Will (LOVE HIM!!!). He asked us to call him back in a few hours and let him know how things were going, and told us that if Will didn't start eating we might need to take him to Vanderbilt. We did not want to do that! We desperately searched for things for Will to eat. We even read a book that day on the ketogenic diet searching for ideas and answers. Seizures can be such a viscous cycle because so many things can increase the chances for having one. Then once you have one, you are that much more likely to have another, then another and on and on. We read that actually being too ketotoic can cause more seizures just like some medicines can do for some people. This is our theory of what happened with Will. We tried a few different things and were finally able to get him eating and not vomiting any more.

When I spoke with the doctor again he asked if I felt like things were improving enogh to not go to the hospital. I said yes and he gave me instructions to call him right back Will had any more seizures, and call him Monday morning regardless of what happened during the night.

Sunday night was another long night filled with seizures every few hours. We were able to get him to start eating more on Monday, and I stated feeling confident again that we just needed to keep on with the diet and we could resume seizure freedom again. Monday night he had a few more though not as violent. Then on Tuesday the atonic(drop) and myoclonic(jerks) seizures came back. Ahh!!! I called the doctor to see about moving up Will's VNS surgery date. It was currently scheduled for September 26th. He thought that was a good idea. He also suggested trying to get in Le Bonheurs Epilepay Monitoring Unit, and maybe even Miami's. He said that both hospitals were much more aggssive in treating epilepsy than Vanderbilt. We discussed a few more treatment alternatives. I asked him to go ahead and start trying to get us in at Le Bonheur, and I would try and move up the surgery date, which I was able to do. It is now scheduled for August 26th. It can't get here soon enough!!