We are now 2 weeks in to a 4:1 ratio. We haven't seen any change with the seizures, but we also haven't seen his blood ketone level go up above 4.5. We expected it to go to 6+ after a couple of days. I'm not sure what is up with that. His glucose has gone down to the mid to upper 60's, which is right where we'd expect it. He might actually be sick, even though he doesn't have a fever. He had an awful lot of seizures early this morning, then threw up a couple of times. He has little spots on his belly. And, he took the longest nap of his life today - 4 hours.
Yesterday, he only had 39 seizures, and that includes 10 seizures that happened at 12:30am. So really, yesterday was probably the best day we've seen in a long time.
Still no word on his helmet. I guess we'll have to give them a call. He absolutely hates the loaner helmet they gave us, so I'm not that anxious to get the new one - as I know he won't wear it anyway.
Today is a Saturday, and I actually got an e-mail from his new naturopathic doctor with his personal cell phone number. We've never had anyone take an interest like this in John. I spent a couple of hours today organizing all of John's lab results and entering them into a spreadsheet. I then sent this spreadsheet to the doctor, as well as faxing the lab results to his clinic. I went over the numbers again and I really don't think there is anything in there that will give him any clues, but who knows.
We're at a real decision point right now. We want to try felbatol before getting the VNS. And the VNS surgery is set for April 4. So, we need to start taking that soon. But, we don't want to start a drug at the same time we're fooling with the diet. So, we need to come up with a good schedule next week. We'll either start the drug while still on the diet, then wean the diet later, or do a quick wean of the diet then start the drug.
