We continued to wean the Topamax in January. On January 25, John was officially drug-free!!! He did have a bad stretch of seizures in the later part of December and the early part of January. This could have been due to the tranxene wean, the Topamax wean, the constipation issues, or just some random cycle. In any case, by the middle of January he was back to averaging about 50 seizures/day. So, I think it's fair to say the drugs really weren't making any difference. John is super happy these days. He's full of energy and smiles all the time. Unfortunately, the seizures are still almost exclusively drop attacks, so we have to follow him at all times with his leash.
Due to the recommendations on the ketogenic diet mailing list, we began to see a "chiropractic neurologist" in January. We had been looking for someone like this for awhile. By coincidence, one of the workers at the play gym that John sometimes goes to gave Yoshie this guys name and number. He ran some odd tests on John during his first visit. He wanted us to try gagging John 3 times a day for starters. Sounds strange, but we did it. It didn't seem to help. In subsequent visits, he had us try other sorts of non-conventional things, but nothing really seemed to help or hurt. By the end of January, he started actually doing some chiropractic adjustments. John seems to really like this, but it is not affecting his seizure control at all.
John finally got evaluated by the early intervention program in January. He doesn't understand much of anything, so he couldn't follow any of their directions. He scored in the lowest 1% in all areas, including motor skills (which I don't think is right). They rated his cognitive age at around 15 months. That was no surprise at all, but still hard to hear.
A week later, two therapists came to our house and observed him more closely and created an ISFP (schedule of therapy). This will only last until he is 3, at which time the school district takes over. These ladies agreed that John's motor skills, while somewhat delayed, are not really of any worry. They got John enrolled in a weekly 1 hour pre-school class, and scheduled a couple of in-home therapy visits.
John's constipation continued to get better in January. I just think it takes a long time to undo the damage that was done. We're definately on the right track now.
On January 30, John went to a very restrictive 4:1 diet ratio. He gets only about 9g of carbs per day now. Since he is now drug-free and at a high ratio, this is our best and last chance at having the diet do its magic. I'm monitoring his blood ketone and blood glucose levels very carefully now. The goal is to get his ketones consistenly above 5, and his glucose down around 65.
