January 7, 2008
Aiden almost made it 2 years seizure free until just before Christmas he started having brief (1 to 2 minutes) focal seizures again. His left bottom lip looked like it was being pulled down, he drooled and his breathing changed. This would happen up to 4 times a day. Of course I called his neurologist right away and he increased his dose of Topamax to 6 a day instead of 4 a day. After 2 days of the meds adjustment, the seizures stopped. I took Aiden in to see the neuro and he said that it's great that the seizures stopped but I should seriously consider him having a hemispherectomy. He gave me the number of a doctor here at UCLA. I had done some research on this surgery before and never thought it would be suggested for Aiden. His neuro always told me as long as the seizures are controlled with meds and he continues to make some progress developmentally, I didn't even need to think about the surgery. Now, I'm hearing a different story.
Apparently, Aiden has been having seizures the whole time but I just haven't been able to tell because there are no physical signs. EEGs never indicated this. Supposedly, the meds have just been controlling the "behavioral seizures". The doc says that explains Aiden's slow development. Aiden is almost 4. He crawls and cruises and is close to walking but he doesn't talk or chew. Now the surgery is urgent because we need to remove the damaged brain before the seizure behavior is transfered to the good side of the brain and slows his development further.
The evaluation process for the surgery has begun. Medical records are being transfered to UCLA and then the testing will begin. Doctors will then determine if the surgery is right for Aiden.
This is a very hard time for me emotionally. Thank goodness Aiden isn't aware of what's going on or what he faces. Please keep us in your thoughts and prayers during our new journey with Sturge-Weber Syndrome.