Tuesday, April 04, 2006

1 year VNS anniversary

As expected, the extreme hyperactivity that we saw after the last med increase subsided pretty quickly. And, right on schedule, the number of daily seizures climbed back to where it was before the Lamictal increase. So, now we are left to decide if the increased Lamictal is helping him at all. It is not clear cut by any means. We can't use the number or severity of the seizures as a gauge, as that hasn't changed in some time. So, we are left trying to determine if his behavior, understanding, or speech has improved at all. Since those changes happen so slow, and we are with him every day, it is very hard to tell.
On the one hand, it doesn't seem like the seizures have improved much since around August when he was on 100mg Lamictal. I often think we ought to start removing the Lamictal and see if things get any worse.
On the other hand, I think he has made some significant improvements in other areas over the last 5-6 months that might be related to the med increase. He can do some things now that would have been unthinkable last summer. We can now take him out to eat. He can play on a playground as we watch from the side. He's basically just a really happy guy these days. I hate to mess with that.
March 28 was the 1 year anniversary of his VNS surgery. It wasn't actually turned on until 2 weeks after that, though. They always say that the VNS can continue to improve things for up to 2 years, so its also quite possible that the improvements we have seen are a result of the VNS. He's definitely a strong responder to the VNS, so it would make sense that we would see added benefit with time.
Yoshie has been doing a lot of therapy with John. He actually sits down for a full 15 minutes during his sessions. Yoshie has developed a method where she basically holds him down, but he has learned to accept it and does pretty well. He IS learning some things, just painfully slow.

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