We had our neuro visit last Monday at Childrens with Dr Zinser.
I was actually pretty impressed, we didn't have to wait a long time, and Dr Zinser treated me with a good amount of respect, and didn't talk down to me...which I HATE...lol
So anyway...they did testing on D (there was a student in there too which really helped since D has NO tolerance for having to wait while mommy talks to the doc...LOL).
The doc said that really the Agenesis stuff isn't what is causing the main problems in D's case. He said its the heterotopia which is like where part of the gray matter didn't form in the right spot so its whats causing the seizure activity. He said in a lot of cases, they just go in and remove those surgically, since they aren't doing him any good, but since D's is fairly large, he is going to put him on anti-seizure meds to see if that helps him at all. And we go back in 4 months to get re-evaluated.
He did say straight out that D will prolly never be on par with other kids (fwiw, I LOVED that he was very straight forward), BUT he said he'll prolly be at about 85-90%. So that was actually reassuring to me...lol
All in all, obviously I was kinda freaked about surgery, but we'll take that as it comes, but overall I feel pretty upbeat about everything. The seizure meds might even calm him some, wowwww??? LOL I just don't want him becoming lethargic but the doc said there aren't any major side effects (won't affect his sleeping or eating, etc). He just might be a little extra sleepy for a couple of weeks (which might be a good thing at naptime...lol). The med he's being put on is Trileptal.
Thats about it, D had bloodwork done too...and y'all...this kid is SO my child. He freaked when she put the needle in, but as SOON as she showed him the blood filling up the tube, he was fascinated. Thats exactly how I am. lol