We started keeping very accurate records of every seizure that we saw. This required us to watch John all of his waking hours. Things varied widely from day to day, but it looked like there was a definate trend of more seizures as the weeks went by. On Sunday, June 20, he had 36 seizures (9 clusters) that we saw. This was really scary. I called the neurologist on Monday for some advice. She wanted us to go back to 7.5mg of Tranxene and start a 3rd drug (Topamax).
It was incredibly hard for Yoshie and I to do this, but we followed through, thinking that the neurologist certainly must know what they're doing.
We also attempted to get a new neurologist during this time. The recommended neurologist had a waiting list, and at least a 3 month wait to get in. 3 months!!!??? That's not going to work. The very best we could find was a Dr. S that could get us in July 8th. Even that seemed way too far off, but we took it anyway.
Through the rest of June, we slowly titrated the Topamax up to 30mg/day. Unfortunately, John did not get any better. In fact, he seemed to get worse. He had 3 days in June with 60+ seizures. Yoshie and I had spent a lot of time studying during this time, so we knew that some drugs could make things worse. We also knew that his disease might just be progressing. We also had done some research on the ketogenic diet and we were convinced that we wanted to try it. The problem is that most neurologists won't let you even talk about it until many, many drugs have failed. By pure coincidence, it turned out that Dr. S was the only neurologist in town that supports the ketogenic diet. It seemed like it was "meant to be". The more we read, the more we thought that we wanted to do it. We were definately going to ask Dr. S when we saw him, knowing full well that he'd make us wait awhile.
I also entered the PacCrest half-ironman triathlon the last week of June. I had signed up before all of this had started, and had really been looking forward to it. I hadn't trained since June 6, so it was really foolish to even try this race, but I think I knew it was likely my last chance to do a race before I became hopelessly out of shape. I drove to Bend the day before the race. I felt terrible the entire race, and really wanted to quit. I managed to get to the finish line in a very poor time, and drove home immediately afterwards.
Yoshie had also planned to take the kids to Tokyo in late June and stay through most of July. Those plans had to be canceled. Luckily, we were able to get most of the ticket price refunded.
