Reading through the posts I am filled with such sadness . . . because in each post I had such hope - hope for a cure. Unfortunately, we have yet to find our cure for Brian. He started having seizures again 18 days after the surgery. We were devastated to say the least. We are all taking it in stride now, trying so hard to find the silver lining.
Brian has had a really rough course. He even ended up re-hospitalized at UCLA for a week.
The medication he was on - Dilantin, made him deathly ill. He lost almost 20% of his weight due to vomiting. Was just sooo sick. So finally his neurologist took him off it. And when it cleared his system, what a miracle!! Our Brian was BACK!!! Laughing, joking, smiling. Running, good balance, playing basketball, swimming (with a vest and me w/him of course), handball, etc etc .... What a great week....
And then the seizures started up again so his doctor added another medication (Depakote). First dose knocked him out! Couldn't walk straight, had nystagmus (eyes moving back & forth rapidly), and vomiting profusely. Most likely because it combines with the other medications he is taking to create a level that is too high.
At any rate, he is miserable again . . .
So, it is sad to look back at the posts when we had hope....
I pray that he can find a happy ending. My boy just wants to go to school and experience life like any other 12 year old ... Please dear God, please help him.
