We upped the Felbatol dose Sat (Mar. 5) to 600mg/day. Sunday morning he threw up everything about 90 minutes after he took his morning dose. He also had a slight temperature (99.5), but no other sign of sickness. The same thing happened last week when we increased the dose from 200mg to 400mg. I'm certain now that this is more than just coincidence. He is still refusing to eat some of his meals, and is not napping as usual. So, we're definately seeing some side effects. We could live with the side effects if this drug were helping his seizures. However, it seems that his seizures have only gotten worse - he had a record 26 clusters yesterday. If today is equally bad, I think we'll have to start getting rid of this drug. I'm certainly not willing to go even higher on the dose at this point.
We're still trucking along at a 3:1 ratio with the diet. Yoshie made his old favorite, "chips & salsa" over the weekend and I think he really liked it. These chips are just ground up almonds, fried in oil. He gets 2 or 3. And, the salsa is actually a couple of grams of real salsa mixed with flax and olive oil, and a tiny bit of salmon (for protein). He also gets his customary whipping cream to get to the required fat.
With this lower ratio, we would expect his blood glucose to go up, and his ketone level to go down. Last night, his ketone level was a very high 5.6, and his glucose was a very low 56. In fact, this 56 was the lowest we've EVER seen. I suppose this could be related to the fact that he isn't getting enough calories right now. We can't let this continue. This furthers my thinking that the diet just isn't working for John, as those numbers are exactly what we've been striving for for months. Now, we finally get them, and John has his worst day ever (as far as clusters).
