Doctor Visit

We joked going into the doctor that we already knew exactly what he was going to recommend. We've been doing this long enough that we really can guess what the course of action will be. If we could just write prescriptions and program the VNS, we probably wouldn't even need a neurologist.
We guessed right on again, which was good news. We are going to lower his Lamictal fairly quickly until it is gone. This is assuming that we don't see any fallout. Then, we will raise his Felbatol as far as 60mg/kg, which is 25% more than he is taking now. After that, he recommended simply keeping with the Felbatol monotherapy. He said that there were a lot of other drugs we could try, but they all come with serious side effects. Since John is doing so well these days, he didn't feel it was worth the risk to try anything new, especially since there is little chance of anything working.
This doctor had obviously studied John's files carefully before we met. This is the first time that a doctor has taken the time to truly go over everything. Some points:
- John's EEG definately shows generalized seizures only. There is no hint of a partial onset, which destroys any hope we had for surgery.
- John's latest MRI was compared with his earlier ones and his brain looks "beautiful". There has been no shrinkage, and the two sides are also the same size. He said it's pretty common in kids like John for there to be shrinkage in the brain, either from the underlying cause or from the meds. It is VERY good that John's brain still looks good.
- John's VNS is still looking good. We expected the battery to be dead by now, but it's still going strong.
After looking at everything, he said that he thought John's seizures would change for the better with time, and that he could potentially grow out of them. We've always held out some hope, based on stories from other parents, but we've never heard a doctor tell us this. In fact, the predictions when we've pressured them have always been pretty bleak. It came as such a shock to hear him say that, that I still don't fully believe it.

Here are the answers to some other questions that we asked:
- If you recall, John had a test for celiac disease last year. This test showed that he had zero IgA. They brushed it off back then, but we brought it up again. This doctor also said that there was no link to IgA deficiency and seizures, and that kids that have immune system problems are always sick, which isn't the case with John. He recommended that we dismiss this.
- We asked about the frequency of blood tests, since most kids on Felbatol get weekly or biweekly blood tests. He insisted that John only needs a test every 3 months, and will go to every 6 months after awhile.
- Yoshie asked about IVIG as a treatment. He said that they had tried it with some kids, but that John just didn't fit the seizure type for that sort of treatment.
- We asked about new technologies that we've read about. He knew everything about all of them, which was great to hear. John isn't a candidate for any, but it's nice knowing his doctor is up on these studies.
I'm sure there is more, but that is all I can remember right now.

We told him about the herbalist and naturopath that we are seeing and he was all for that. He said we could send him a list of everything that John is taking so they could check for any drug interactions. He even added thyroid tests to John's lab slip, as the naturopath wanted that information.
I've said it before, but I really believe we've ended up with the best neurologist around. As an added bonus, John really likes him. I also believe we have the best naturopath and herbalist in town.