Sunday, November 13, 2005

getting better again

Things stayed mostly the same for about a week after my last update. John got a little cold and subsequently had 1 bad day with 35 small seizures or more. Once he got over his cold, he returned to more normal days of 15-20 seizures. These seizures are really small, and I'm starting to think they are actually getting better with time.
Yoshie is working hard during the day to teach John some basic commands. He now understands "sit down", "No", "take a bath", "go", "nen-ne" (go to bed), "tabetai" (I want to eat), "bu bu" (go to car), "good", "more", and quite a few other things. He's definately making progress. He's also trying hard to say a few more words, though progress is slow. He's dancing again, and plays with Maya all the time.
We still haven't heard from the speech therapist. I guess I'll have to follow up with that. The occupational therapist came by for a short time, and she'll be available for consultation from now on. We're not worried at all about his motor skills, though, so I doubt we'll have much contact with her.
The really good news is that John only had one miniscule seizure all weekend! He started getting better on Friday, with only 4 seizures that we saw, then didn't have another one until Sunday evening. It almost feels like they are burning out, but we know enough not to get too optimistic. The interesting thing is that we didn't change anything. He's still on the same dose of Lamictal, we haven't touched the VNS in a long time, and we have been keeping his diet consistent. We really can't explain why he suddenly got better. We're hoping that it is simply the cumulative effect of the VNS.
The down side to this is that he isn't sleeping very well again. This happened the last time he had a seizure free stretch too. It lasted a couple weeks last time before he started sleeping soundly again. I can only imagine that he is feeling good and doesn't want to sleep. It's certainly a small price to pay. Just one short year ago, John was on a gluten and dairy free keto diet, severly constipated, on 3 drugs, and getting worse all the time. He was diagnosed with likely Lennox-Gastaut syndrome, and we were expecting further cognitive regression. I don't think anyone would have believed he would be this well off right now.

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