We had another appointment with the neurologist. John is pretty stable these days so we decided not to change anything for now. We did get the VNS turned up slightly and we got an appt. for another routine EEG and blood draw (to determine the Zonisamide level).
We talked about how John's head drops have changed so that he turns to one side now. We're always hopeful that they will be able to pinpoint where these seizures are coming from. He asked if John sticks out one arm when having a seizure (like shooting a bow and arrow) and he asked if he turns circles or rolls over. We had to answer NO to all of these questions so the Dr. felt like these are still generalized seizures in every sense so likely nothing has changed. However in the days since this appt. I have noticed that he DOES stick one arm out and start to turn around for just a few seconds at the beginning of his longer seizures. Hopefully we will see something when he gets his EEG.
Saturday, May 15, 2010
Tuesday, May 11, 2010
more zonegran
Since John continued to have the small seizures, we slowly ramped up the Zonisamide to 150mg a day. Soon after that, he started having 30-45 second tonic-clonic seizures again. We never know if it just coincidence but the correlation was strong enough this time that we lowered it back down to 125mg. Within 2 weeks, the tonic-clonic seizures were gone. So, we're pretty sure that the higher dose was causing problems. It could just as easily be something like he was fighting off some sickness. This has been a good drug otherwise, so we're content to keep him at 125mg for now. He still has the daily small "head-turning" seizures, but I think we can all live with those.
We've noticed that his "talking" has gotten a bit clearer lately. He likes to sing "Happy Birthday" and most of it is pretty clear now. And, he can count to 6 now. We'll see how long that lasts. School reports continually say that he is happy and excited.
He did get approved for extended year school this summer. That is definately a good thing, considering his tendancy to forget things that he has learned.
We've noticed that his "talking" has gotten a bit clearer lately. He likes to sing "Happy Birthday" and most of it is pretty clear now. And, he can count to 6 now. We'll see how long that lasts. School reports continually say that he is happy and excited.
He did get approved for extended year school this summer. That is definately a good thing, considering his tendancy to forget things that he has learned.