We've been wrestling with whether to go up or down with John's Lamictal level. On the one hand, we want to make positively sure that we've given this drug a chance, especially since it took us over a year to get up to this level. On the other hand, it doesn't seem like John has gotten any better as we've gone up on this drug. What are the chances that one last increase would be the magic bullet? Every single time I give him a dose, we ask the question of whether I should give more or less. It seems crazy to just stay the same since he's still having seizures. We finally decided to go up one last time to 200mg/day, but we also decided to wait a few days, since Yoshie was first trying a soy and dairy free diet for awhile. Ironically, we forgot to give him his morning dose last Friday. That's the first time we missed a dose since this whole thing started. Wouldn't you know it, he seemed to get somewhat better. So, we took that as a sign that we should go down, and we took the plunge and took out 1 pill tonight. So, now he is on 150mg/day. We'll go down another pill in 2 weeks assuming things stay the same or get better.
We also had another meeting with the county to discuss John's therapy. John will start back at preschool once a week on Thursdays beginning this week. With that comes 15 minutes of speech therapy. Seems unbelievably insufficient to me, but I've given up trying to understand their reasoning. We'll continue on with his private therapist and take what we can get from the county. We have also gone to a couple of parent training nights, where they teach us how to teach John. Those have gone pretty well. Parent "coaching" is also included in that program, and we have had one of those sessions already. The therapists are good, and I think the classes are helpful.
The other big news around here is that John has started to use the toilet. Well, he won't tell us when he wants to go, but if you sit him on there, he will almost always go. I think that is a great first step and came rather unexpectedly. The little milestones are definately appreciated a lot more with the special needs kids. Last week, I would have easily believed that he could never be potty-trained. Now, I think he could figure it out at any time.
Monday, April 17, 2006
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.
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.