July 2, 2008
I got a call last Friday from Sue Yudovin, Epilepsy Nurse Specialist, at UCLA. She told me their team met and discussed Aiden's case and they don't think Aiden should have the surgery at this time. Reason being, his seizures aren't severe enough and there are still medications we haven't tried.
If you read my earlier post titled "surgery plans" this is in total contradiction to what Dr. Mathern, the neurosurgeon, told me when we met on June 16th.
At this point, I don't know what to do. I'm so confused.
On one hand, I'm kind of glad Aiden might not have to face a hemispherectomy right now, but on the other hand, if we wait too long, his chances for a good outcome will be less.
In the meantime, Sue suggested we add Lamictal to his regimen. I'm going to see what Aiden's local neurologist thinks about that tomorrow at 4:15pm.
I'm thinking about getting a second opinion at Johns Hopkins. I'm checking to see if they can request all of Aiden's tests performed at UCLA and give me an opinion based on that or if I have to fly out there and have them perform their own tests.
More to come...