John turned 5 years old on Wednesday. This birthday was especially good, as it was his first seizure-free birthday since he was 1. I've been scared to say anything, for fear of jinxing it, but John has not had a single seizure since his first Keppra dose 3 weeks ago. I mean nothing, not even a tiny head drop or eye flutter! This is the first time we've ever seen any clearly noticeable change with a drug. And this is dramatic. We know all too well that the seizures will come back, but it's just been so nice to have this break.
Needless to say, as long as this streak continues, we will not be changing anything with John's diet, herbs, or drugs for quite awhile.
In other news, we had John's last IFSP meeting to talk about his goals and his summer school. He didn't meet a single goal for last year, so all his goals got carried forward. We did manage to get 4 days a week of summer school, but not at the school we were pushing for. It's only 4 weeks, so it wasn't worth a long fight.
We also have a therapist coming to our house twice a week over the summer. Her job is to provide speech therapy, and teach us parents how to incorporate the therapy into our everyday lives. Our first meeting is next week.
Friday, June 15, 2007
Wednesday, June 06, 2007
Keppra + kindergarten
John's seizures continued to get worse, to the point he was having a 45-60 second seizure almost every day, and even started having multiple long seizures in the same day. So, we didn't really feel like we had any choice but to start John on the Keppra. He now takes 1.2ml twice a day. Man, we hated to do that, but really felt like we had no choice. Check back soon, and I'll update on how the Keppra is working.
We also got to go visit John's proposed kindergarten placement for next year. We were pleasantly surprised. This is an autism program, which I think will be good for John. The program looked good, the teachers looked good, and the teacher/student ratio was excellent. The kids that we observed all were more advanced than John, but I guess they are a year older. Some of them seemed significantly older, so I wouldn't be surprised if some of them got a late start with kindergarten.
Since it was an autism program, we were a little worried that they wouldn't be experienced with seizures, but that wasn't the case. They knew all about the VNS, diastat, etc.
They also had separate stations of snack time - one for normal snacks, and one gluten-free. Since John is still mostly gluten free, that will be a big help.
We also got to go visit John's proposed kindergarten placement for next year. We were pleasantly surprised. This is an autism program, which I think will be good for John. The program looked good, the teachers looked good, and the teacher/student ratio was excellent. The kids that we observed all were more advanced than John, but I guess they are a year older. Some of them seemed significantly older, so I wouldn't be surprised if some of them got a late start with kindergarten.
Since it was an autism program, we were a little worried that they wouldn't be experienced with seizures, but that wasn't the case. They knew all about the VNS, diastat, etc.
They also had separate stations of snack time - one for normal snacks, and one gluten-free. Since John is still mostly gluten free, that will be a big help.