Journal entry by Barbara Bradley — Oct 4, 2010

Another long day at Duke Hospital. We were there over three hours and met with the chief of neurology and another member of the epilepsy team. They reviewed her previous 24 hr EEG and got a more detailed understanding of her seizures. Dr. Mikati feels she would be a candidate for surgery as most children with her condition but he can’t proceed based on what we know. Only two seizures were captured so he wants her to have another EEG. Now that she is having so many, it shouldn’t be hard to get what they need. He wants her to have a PET scan. This test is over my head but the idea is to make sure the right side is functioning normally. The MRI shows it to be healthy but the PET scan will give us more information. He also wants to wean her off the depakote while raising her topamax dose over the next three weeks while we are waiting on getting her in for these other tests. Depakote can interfere with the blood platelets and cause bleeding (almost like aspirin). This is NOT what you want when undergoing brain surgery.

In the mean time, she is back to the way she was when we hospitalized her and having 2-3 seizures a night. We go back to living in the moment. On a good note, I had been in conversations with Johns Hopkins and shared her records with them. I heard back last week from one of their surgeons and he agreed she needed surgery and said Duke is very good and more than capable of handling the surgery. Their waiting list is even longer so his recommendation was to go with Duke if they are able to see her so quickly. This was a huge sigh of relief for us.