EEG

John had his first EEG since Oct. '04 yesterday. It was just a short one done right in the neurologists office before our visit. Of course John hated having the leads put on his head so we had to hold him there for the 15-20 minutes while he was crying hysterically. He struggled with us the whole time. I wonder if that has any influence on the EEG readings? Anyway, his EEG was pretty bad, unfortunately. He had a number of seizures during the test that we didn't even outwardly see. So, I guess he's having a lot of seizures but just some of them are long enough that we can see them. Also, he continues to have significant background slowing. With all that is going on in his brain, it is sort of amazing that he continues to do quite well. Here is a 10 second snapshot of the EEG:















You can see one of the seizures occur here. Notice that it is only about 1 second long and affects the entire brain.
So, despite the fact that the VNS has really helped his outward seizures, it doesn't look like it has done much for his cognitive slowing. Our neurologist said that this was typical for the mycoclonic epilepsies, and that even if he were to go seizure-free, he likely wouldn't just start learning again. Since drugs, diet, and VNS have not helped his EEG, the only other possible alternative is brain surgery. Of course we've already gone through the 24hr EEG to determine if he was a surgical candidate and he isn't. However, there are some new tests that are being done at UCLA that can sometimes find a seizure focal point where traditional methods have failed. It's a long-shot, but I think it would be good to have the whole gamut of tests run again and reviewed by a different epilepsy team. So, we are going to pursue this later this year.
In the meantime, John had his VNS ampage increased again to 2.0mA, and we remained at a 54% duty cycle (on 54% of the time). The magnet is now set at 2.25mA. Even at these rather high parameters, the VNS doesn't appear to even be noticed by John. He had a lot of strong seizures yesterday after the increase, so it hasn't helped him yet. Hopefully we'll see a gradual improvement over the next couple of weeks.
We're getting another blood test in the next couple of days to determine the level of Lamictal in his system. Assuming it isn't already too high, we'll increase his Lamictal dose once again after giving the VNS a couple of weeks to do its magic. John has been on Lamictal for about a year now, and although we have no idea if it is doing anything at all, we want to make sure we've really given it a shot before we start the long process of getting rid of it. And, so far the side-effects of the Lamictal have been much more tolerable than the other drugs he's tried.
The doctor mentioned Vigabatrin and some benzo again, both of which we aren't interested in. He also mentioned trying to add Topamax back in to the mix. We told him we didn't want to do that either and he said he understood. He actually said, "Think of me as a hardware store. I can present all of the options for you, but you have to decide what you want.". It's all a big guessing game with ever increasing risks. My son's life is on the line, and we're left relying a great deal on on gut-feelings and parent intuition. And, it's not the doctors fault - it's just the way it is. I'm grateful that our doctor doesn't pretend to know everything and lets us make decisions.