On Monday we had our EEG.
I was able to get us out of the 24 hr. Video EEG stay. We just had a prolonged EEG
(4 hrs long).
The prelimiary results of the EEG was that there was an occasional spike but no seizure activity. His background was between 5 and 7 which is slow for his age but is expected because of the brain malformation.
Yesterday we had our 6 month recheck with Dr. C., our neurologist.
And I'll tell you again, like I do every time I see him. I love this doctor. He ALWAYS has something good to say about Daniel. He takes his time with you and will answer whatever questions you have. This guy in my eyes...is the God of neurology (for the things Daniel goes to him for). I always leave with a good feeling. He believes in Daniel like we do. He KNOWS that there is something there.
I can tell him how Daniel scoring high on the receptive language and he'll say "Well I knew he'd do that", or how he is doing something in physical therapy and he'll say "Well sure he is, did you think he wouldn't?"
Unfortunately we weren't able to see our favorite nurse "Ms. Kathy" as we visited at an off site location. But we did see our favorite resident dr. along with Dr. C.
So as of right now, we are sticking with what we are doing. 500mg of Vigabatrin 2x a day with VEP/ERG testing every 6 months (which will fall in July) and in 6 months another EEG.
According to the doctor 500 mg for Daniel size is on the low side but because its doing what it needs right now we are not looking at changing it. I get nervous because there is the chance of vision loss with the Vigabatrin, but it is controlling the seizures. And who knows if we'll have such luck with another anti-seizure medicine...and what are the side effects of those?
He also planted the seed of surgery for Daniel's drooling. Although it is control with Robinul currently, he said we'd be able to get rid of the medicine and the side effects that come with it. Another thing to think about....but sheesh, I hate surgeries.