John is now on his maximum dose of Felbatol, and he's still having many smaller seizures and some bigger ones. He was having a large seizure every morning, so I followed him around with a video camera on Dec. 31, hoping to capture a seizure so we could show the neurologist. After about 20 minutes, he sat down to eat and I turned off the camera. In that very instant, he went in to a seizure. I quickly turned on the camera and got the last 20 seconds or so of the seizure, but this one was about 35 seconds which is the longest we've seen for awhile. After that, he went 2 full days without a longer seizure so we were really hopeful that the Felbatol was finally working. However, he did have another one last night and a couple today. These were more of the 10 second variety, but still frustrating. I guess the Felbatol is not going to be the answer. I don't really know where we go from here, but we have an appt. in a couple of weeks so we'll find out then.
Everyone is back to school and work. John did OK his first day back, but did have a lot of "head drops", and we know they don't catch everything. I don't know if he'll lose his 1 on 1 aide soon, but we certainly hope not. Our meeting with the EI team before the holidays got canceled, so we'll be meeting again to discuss.