John had a seizure of over 1 minute on Friday, along with his normal couple dozen of small seizures. That was the longest we'd seen in a long, long time. Over the weekend, he also had 3 seizures of around 10 seconds in length. So, that obviously isn't good. But, the overall number of seizures has gone down to about 15 per day. And, his afternoons and evenings have been really great. We think he is understanding more and more. So, longer seizures, but likely better development. Good trade-off or bad? That depends on when you ask me!

We had a meeting with his EI teachers today. He isn't crying at all at EI anymore, which is just great. He also isn't learning anything, and those meetings often seem overly depressing. But, the fact that he goes there without crying and seems to enjoy it is a huge improvement as far as I am concerned. He is keeping his 1 on 1 aide, which is good news of course. John had a 5 second seizure during the meeting. I think it was a bit of a shock to the teachers, as they had only heard of the longer seizures and haven't had to experience one yet. All discussion stopped and we had to revisit what to do in the classroom if he should have a long seizure. I'm really glad they got to see one, even if it was a minor one.

John has been at 1000mg of Felbatol for 10 days now. The general range for kids and Felbatol is 15-45mg per kilogram. John is 16kg, so this would mean his range is 240mg - 720mg. So, he is already way above the normal maintenance dose. But, we don't see much in the way of side-effects, so I wouldn't be too surprised if we end up going higher still. We'll find out at our appt. next week.

I mentioned that I caught a video of John having a seizure. It isn't that pleasant to watch, but I thought I'd post it so I can get the opinions of others familiar with seizures. This seizure seems mild, with almost no convulsing. He doesn't even drop his spoon. He even blinks during the seizure. Does this still look like a generalized seizure? It probably is, but it just seems different than the long seizures he used to have. The video can be found here (6mb).