Today we went to see Dr. Pearl for Evan's 3-month appointment and follow-up from the AMT Pet Scan. We came away with quite a bit of information--more than I had expected.
Dr. Pearl was disappointed by the results of the AMT PET scan because it showed a larger area involved than originally expected. We had all hoped the test would pinpoint the tuber(s) as the trigger for Evan's seizures, but instead, a large area is identified as having increased activity and it is no longer such a "simple" brain surgery.
Because Evan is so "high functioning", Dr. Pearl doesn't feel surgery is a good option at this time because the seizures aren't effecting Evan's cognitive abilities. His opinion is to wait and see how things go and keep monitoring Evan to make sure he continues to develop at the same rate. If the seizures begin to have a negative cognitive effect, Dr. Pearl said he would feel differently about surgery.
He agreed with Dr. Chugani about trying Dilantin or Vigabatrin for the time being. So, our next drug is Dilantin and we're going to give it a two week trial to see if it reduces the seizures. If not, we'll move onto Vigabatrin and we'll probably give it the same amount of time for a trial. We're not thrilled about either drug and both have some nasty side effects that can occur after 6-12 months of usage. So, I guess we only have to worry about that if one of them works.