Another neurologist visit

Since John's GTC, we lowered his Lamictal dose to 100mg. I was sure that the doctor was going to scold us for that. The first thing I told him was that we lowered it, and I intended to lower it again to 75mg. He said, "Sounds good to me". So now we are hoping that the decrease in Lamictal will also mean no more GTC seizures. There is a good chance of some withdrawal seizures, though. So, the next couple of weeks could be tough.
He was willing to try out our theory that the VNS is causing the decrease in the number of seizures, and the Lamictal was causing the stronger seizures. So, he turned the VNS up quite a bit. It's now rapid cycling at 14 seconds on, 18 seconds off, at 1.5mA. I was uncomfortable with the amount of stimulation that he was getting (it's on 43% of the time). But, he wouldn't budge. Of course we could have demanded he change it, but he explained how he's done hundreds of them and I left there believing that he knows what he is doing. If this shows promise, it will be changed to 7 sec. on and 12 seconds off on our next visit. I'm actually more comfortable with that, because it would be stimulating him less overall. I tried to get him to go to that setting right now but he wouldn't do it.
John tolerates the VNS extremely well. It doesn't seem to bother him at all. It takes some kids many, many months to get to this level comfortably.
I also had him give us another prescription for Diastat (emergency drug for the GTC seizures). Our current dose was only 2.5mg. I was reading the patient information and it looked to me like John's dose should be 10mg, based on his age and weight. He agreed.
We asked about being referred to Seattle or LA for more testing and a 2nd opinion, and he agreed that this would be a good idea. We'll get that ball rolling in the next couple of months.
As we were leaving, I mentioned John's new seizure type: opening his mouth and turning to the left. These seizures are so minor that we almost didn't mention them. Sure enough, right after we talked about it John did it right in front of the doctor, then preceded to have a drop seizure. The doctor immediately said that this might be significant. He said that looks like a focal point, and he wants more testing done (probably in Seattle). I told him that we already had the full workup to look for a focal point and there was none. He said, "we need to have someone else take a look". I hope this also means that they will be willing to do a PET or SPECT scan now. They wouldn't do it before as they were positive that there wasn't a focal point.
Anyway, it's only a glimmer of hope, but if they could find a focal point, that would be HUGE! If the focal point is in an easily accessible location, they can go in and remove that part of the brain. I never thought we'd be wishing for brain surgery, but that's exactly how we feel. This type of surgery has a better than 50% chance of curing the epilepsy.