I'm sorry to report that the increased Felbatol dose isn't helping his seizures at all. Furthermore, the side effects are getting more pronounced. He now is not interested in breakfast at all. We really have to force him to eat anything. He already gets so little, that this is really worrisome. If this side effect doesn't wear off soon, I think we'll have to quickly wean the diet so that we can give him other foods that he would enjoy.
We saw his neurologist again yesterday. It was a dissappointing visit, as he really said he doesn't know what else to do at this time. So, we are going to keep increasing the felbatol dose in hopes that it will work at some level. He told us to keep going up until John's quality of life deteriorates too much, then we'll back off some. The suggested maximum dose is 45mg per 1kg of weight. John is 13 kg, so he "should" have a max dose of just under 600mg. As of today he is on 600mg. However, he wants us to go up to 900mg if possible. That is very scary. He also told us that one of his patients died because of Felbatol. This girl also had Lupus, so it's a different situation, but still scary.
John also had to give some blood again yesterday. He cried, which is a good thing (at one point he was so drugged up that he didn't even care).
John has been doing a great job wearing his helmet. He doesn't seem to mind at all anymore, which has really made things easier for everyone.
