neurologist visit

We saw the neurologist again on Friday. As is customary, he let us decide what to do and he just gave us his approval. Since his last VNS adjustment didn't seem to make any difference we decided to increase his Lamictal one more step (to 150mg/day) to see if that made any difference. We made that increase on Friday night. So far, it doesn't appear to be doing anything, as John is continuing to have the same number and type of seizures. Right now, I don't know what to think about Lamictal. It might be doing nothing, it might be helping, and it might be hurting. We aren't going to change anything else now until John has another EEG. That is scheduled for the 31st of this month, right in the doctors office. It will be a routine EEG, so it shouldn't take more than 30-40 minutes. He hasn't had an EEG since Oct, 2004, so it will be interesting to see what that shows.
We are very concerned with John's very slow development. We asked the doctor his opinion on what we could do about it. His response was that John is simply doing amazingly well, all things considered, and he hinted that we should probably just be happy with how far he has come. He was surprised that John didn't need a helmet anymore and made the comment, "Once kids have to wear a helmet, they very rarely are able to get rid of them". He said that 15 years ago, John's story would have been unheard of (failing so many drugs only to find something that worked). We asked about different drugs, and he reiterated that drugs don't appear to work for John and that is why we got the VNS in the first place. We should just be very thankful that it has worked so well. Yoshie and I have mixed feelings about his comments. Yes, we are very thankful for how well John has done over the last 6 months. But, we've read enough stories to believe that it can still get better. I suspect that we'll see a lot of continuous background activity on his EEG. And, I also suspect that if we can clear up this background activity that John can progress at a faster rate. The doctor said that John probably has some other unknown issue and that seizures are just a part of it. My gut feeling is that the seizures ARE the problem and there is some chance that he will grow out of them or we can find a treatment that can better control them. The brain is growing and changing, so drugs that failed in the past may work now. And, there is an endless number of drugs and combinations of drugs to try. And, the VNS could well work even better given more time. So, we still have a lot of hope, and I believe our hope is justified.
Nothing to report on his therapy, because he hasn't had any. What a complete disappointment our county special needs program has proven to be. We do have a meeting set up with the private speech therapist again for later this month. We know she is good, but she already has such a full schedule that it's hard to get to see her. It appears to me that there is a huge opportunity for good speech therapists. There just aren't many of them, and parents are willing to pay top dollar for good ones. With so many autistic kids these days, it just seems like the opportunity is endless.
Yoshie's mom is staying with us this week. At first, John was really scared of her. But, each day gets a little better and I think he is finally pretty comfortable.