John has been a little sick over the last week, so we have not attempted to change his doseage. We are still planning to go up another half a pill (12.5mg) sometime in the near future. He continues to have 5-20 small seizures every day, but he is doing fine and continues to learn at his own pace. He knows what it means to "take a bath" now. He'll run in to the bathroom if we say that. And, he has learned that he has to sit down in order for us to play his favorite video. He's dancing again, and can get quite animated when "playing" the piano. I think it's fair to say he is about back at the point he was when this all started. Hopefully he'll continue to move forward. And, we'll also hopefully be able to eliminate these last small seizures.
We have an IEP meeting tomorrow. We're going to push for home therapy, but if they refuse it's not the end of the world. We're already set up to start private therapy. Maybe he can go back to a preschool next year if he's doing well.
Thursday, October 27, 2005
Tuesday, October 18, 2005
No change yet with Lamictal, CURE
John has been on 100mg of Lamictal for about 1 week now and so far we haven't seen any change, either good or bad. Since we're not seeing the side-effects like the l
ast time at this dose, I think we're going to go up another 12.5mg this week.
We've been trying some new techniques recommended by our speech therapist, and they seem to be working. The progress is still slow, but he is definately understanding more than he used to. Hopefully, he will continue to improve.
We've given up on the preschool, and we are scheduling another meeting to talk about what our other options are. We would like some home therapy, but I don't know if they will go for that.
Since John is so much improved, I made the leap and signed up for another Ironman triathlon to take place next June. This time, I'm using a program that is associated with Ironman to raise money for a charity that I feel is very deserving.
The charity is called Citizens United for Research in Epilepsy (CURE).
My personal donation page is located here. I've also put the link above the picture on the right side of this page.
ast time at this dose, I think we're going to go up another 12.5mg this week.We've been trying some new techniques recommended by our speech therapist, and they seem to be working. The progress is still slow, but he is definately understanding more than he used to. Hopefully, he will continue to improve.
We've given up on the preschool, and we are scheduling another meeting to talk about what our other options are. We would like some home therapy, but I don't know if they will go for that.
Since John is so much improved, I made the leap and signed up for another Ironman triathlon to take place next June. This time, I'm using a program that is associated with Ironman to raise money for a charity that I feel is very deserving.
The charity is called Citizens United for Research in Epilepsy (CURE).
My personal donation page is located here. I've also put the link above the picture on the right side of this page.
Wednesday, October 12, 2005
Lamictal not helping
John didn't improve at all with the Lamictal dose at 87.5. In fact, his daily seizure count is slowly increasing. I also think that some of his seizures are getting a bit stronger. Still, they aren't bad, but I don't want things to spiral out of control again. We increased his Lamictal to 100mg on Oct. 10. So far this increased dose isn't helping either. On Saturday, he only had 4 seizures and we thought things were getting better. Sunday was more of a normal day with 10-12 seizures. Yesterday was worse again with 15+ seizures. We also saw the seizures cluster again for the first time in months. It's hard to say if the Lamictal is hurting him, or if things just change randomly. He seems a bit better again today, so we'll wait this out. I don't think we'll go any higher on the Lamictal unless we see some improvement over the next couple of days.
We did see a new speech therapist who was optimistic about John's chances to learn to speak, which was nice to hear. We're probably going to attend a "workshop" with her, and then take on the therapy ourselves. She said we had to commit to 20+ hours/week of therapy, and she left it up to us if we wanted to do the therapy ourselves or hire a therapist. Of course we are willing to do it ourselves.
We did see a new speech therapist who was optimistic about John's chances to learn to speak, which was nice to hear. We're probably going to attend a "workshop" with her, and then take on the therapy ourselves. She said we had to commit to 20+ hours/week of therapy, and she left it up to us if we wanted to do the therapy ourselves or hire a therapist. Of course we are willing to do it ourselves.