2 year anniversary

It's now been over two years since John's seizures started. It's been a long two years for sure. It's very frustrating that he continues to have many daily seizures after this long. And, he hasn't progressed much cognitively over that time either, though some progress has been made. But, all you have to do is take a look at his 1 year anniversary posting to see that he is doing much, much better now than he was 1 year ago. We are very thankful for that.

While technically John did have a couple of Grand Mal seizures in the last year, they were last June. So John hasn't had a major seizure in almost a year now. No Grand Mals, and no drop seizures. He hasn't had to wear his helmet since last June, either. The therapists agree that he doesn't need any therapy on the physical side. So, for the most part we are very happy with how this year has gone. On the other hand, John did go seizure free for two months last year. We know it's possible to get there again, and it's been very frustrating not being able to achieve that again. It's also been a tough year trying to get him the help he needs with his delays.

We haven't kept a detailed seizure count for quite some time now, but Yoshie does record the general number of seizures every day. So, if I had to guess, I'd say John had about 5000-6000 seizures that we saw in the last year. That is obviously a huge improvement over the previous year.

After going through 6 drugs last year, this year he has remained only on Lamictal (and the VNS). This despite our doubts that the Lamictal is doing anything.

As far as tests, he only had 1 short EEG this entire year.

The next year will bring a new neurologist, almost certainly the whole gamut of tests again, and likely another drug trial or two. While this is hard on John, and hard on the family, we welcome the tests and trials in the hope that we can find something that will really work for him.