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.

More of the same

I haven't posted in awhile, mainly because nothing has really changed. John is still taking 150mg of Lamictal per day, and is continuing to have roughly 15 small seizures every day. He remains happy and is continuing to progress cognitively, still at a snails pace though.
We did have a meeting with his private speech therapist. She has a lot of confidence that John will progress well, so it gives us a lot of hope. We have some items to buy (ie special headphones, picture cards, blocks) and we have some stuff that we are supposed to study before we see her again.
Yoshie also talked to Maya's old preschool, and we are considering enrolling John in the 2's or 3's class starting in September. He'll be 4 at that time, so he'd be either 1 or 2 years behind. It sort of depends on how John does over the next few months. Right now, he does not have the understanding or patience to attend the 3's class, but I think he is improving in that regard. I think he'd enjoy being around the other kids.
John has his EEG next week. That will certainly be interesting. We might also ask for a referall to another epilepsy center, depending on what the EEG looks like.

neurologist visit

We saw the neurologist again on Friday. As is customary, he let us decide what to do and he just gave us his approval. Since his last VNS adjustment didn't seem to make any difference we decided to increase his Lamictal one more step (to 150mg/day) to see if that made any difference. We made that increase on Friday night. So far, it doesn't appear to be doing anything, as John is continuing to have the same number and type of seizures. Right now, I don't know what to think about Lamictal. It might be doing nothing, it might be helping, and it might be hurting. We aren't going to change anything else now until John has another EEG. That is scheduled for the 31st of this month, right in the doctors office. It will be a routine EEG, so it shouldn't take more than 30-40 minutes. He hasn't had an EEG since Oct, 2004, so it will be interesting to see what that shows.
We are very concerned with John's very slow development. We asked the doctor his opinion on what we could do about it. His response was that John is simply doing amazingly well, all things considered, and he hinted that we should probably just be happy with how far he has come. He was surprised that John didn't need a helmet anymore and made the comment, "Once kids have to wear a helmet, they very rarely are able to get rid of them". He said that 15 years ago, John's story would have been unheard of (failing so many drugs only to find something that worked). We asked about different drugs, and he reiterated that drugs don't appear to work for John and that is why we got the VNS in the first place. We should just be very thankful that it has worked so well. Yoshie and I have mixed feelings about his comments. Yes, we are very thankful for how well John has done over the last 6 months. But, we've read enough stories to believe that it can still get better. I suspect that we'll see a lot of continuous background activity on his EEG. And, I also suspect that if we can clear up this background activity that John can progress at a faster rate. The doctor said that John probably has some other unknown issue and that seizures are just a part of it. My gut feeling is that the seizures ARE the problem and there is some chance that he will grow out of them or we can find a treatment that can better control them. The brain is growing and changing, so drugs that failed in the past may work now. And, there is an endless number of drugs and combinations of drugs to try. And, the VNS could well work even better given more time. So, we still have a lot of hope, and I believe our hope is justified.
Nothing to report on his therapy, because he hasn't had any. What a complete disappointment our county special needs program has proven to be. We do have a meeting set up with the private speech therapist again for later this month. We know she is good, but she already has such a full schedule that it's hard to get to see her. It appears to me that there is a huge opportunity for good speech therapists. There just aren't many of them, and parents are willing to pay top dollar for good ones. With so many autistic kids these days, it just seems like the opportunity is endless.
Yoshie's mom is staying with us this week. At first, John was really scared of her. But, each day gets a little better and I think he is finally pretty comfortable.