Since we really haven't seen any improvement on the diet at the 4:1 ratio, we made the tough decision on Sunday to start weaning the diet, and start with the Felbatol. This was around 1pm. As is usually the case with these things, as soon as we were happy with our decision, something happened to change it. In this case, it was John's suddenly good mood and lack of seizures. He seemed to be doing very well, so I took his ketone reading at 3:45. It was 5.4, which is the highest we've seen in a long time. He continued to do well all afternoon. I took his ketone level again at 6:30pm and it was 5.8! He ended up with only 35 seizures for the day, and only 9 after noon. Finally at 10:30pm his ketone level was 6+ (the monitor only goes up to 6). So, he had a great afternoon, and his ketones were higher than we've ever seen. It might be coincidence, but it also could mean that he just needs really high ketones. In any case, we saw a glimmer of hope, and we just couldn't start weaning the diet after that.
We were really hoping his high ketone reading would continue on Monday. Of course, right on schedule, he got a cold overnight and woke up with a runny nose on Monday. This means high glucose, low ketones, and lots of seizures. I guess we'll now have to wait until his cold is over to make any further decisions about this. I consulted with the dietician today and she agreed that we really need to test this high ketone thing before we do anything else.
