At our last doctor visit, we had a chance to see the EEG and how it correlated to John's seizures. John is definately still having seizures, but for some reason the EEG does not go crazy during the times that we see the seizures. It's pretty bad at other times though, when we don't see anything. As bad as his EEG is (especially during sleep), it's still a big improvement over his previous EEG's. Because of this, and the fact that the seizures he currently has don't seem to phase him that much, we decided to slowly lower his Felbatol. Since it's clear we can't stop the seizures completely with the drugs, we'd rather have him on fewer drugs even if the current seizures get a little worse. Obviously if he goes back to having Grand Mals or drop seizures we will do anything and everything to stop those. I don't think that is going to happen, though.
So, as of today John is on 6mg per day of Felbatol. This is exactly half of the dose he was on in December. So far, we haven't seen any real worsening of the seizures. And, I think we have seen some real improvements in other areas.
Talking is just not John's thing, but he seems to understand more and more of what we tell him. He also can almost ride his bike now (with training wheels). I tried forever to teach him how to pedal but he just couldn't get it and really wasn't interested. He's finally getting the hang of it, and actually likes to ride his bike now.
