A small setback

John seemed to do OK with the first Lamictal reduction, so we took out another quarter pill last Friday (8/19). Saturday night we thought we might have seen a small seizure. He confirmed it on Sunday with 10 or so small seizures. These seizures are nothing like before, and consist of just a very slight head nod followed by a few seconds of confusion. These could be withdrawal seizures, but it was hard to see John seize at all again after 2 months of seizure freedom. So, on Monday morning we added the 1/4 pill back in. Unfortunately the seizures have continued throughout the week, though I think they may be getting less frequent again. If he's still having seizures early next week, we'll raise his Lamictal again to the point where it was when he had the good seizure-free stretch (75mg). If that doesn't work, I guess maybe we'll try to get the VNS adjusted. It's disappointing for sure, but if you look at the big picture, things are still very good.

I took John to speech therapy last week, and his therapist decided that John was too delayed for speech therapy. She thought he needed more time. She said the best thing for him would be just lots of group play time, in a structured setting. He needs to first understand some of what we are saying to him before he can really learn to talk. So, we are dropping the speech therapy for now, and we'll try occupational therapy for awhile. Plus, he will start back up with his preschool soon.

Starting the Lamictal wean

First and foremost, John has remained seizure-free for 8 weeks now. We are still cautious of course, but mostly he can do whatever he wants now. His turn-around is almost unheard of, especially considering the severity of his condition. Our life has almost returned back to "normal", but we'll never take another normal day for granted for as long as we live. There are no guarantees that this will continue, and in fact I'd say it's probable that the seizures will return. But, I'm starting to believe that it IS possible that he will remain seizure free now. The VNS has proven to be exactly what he needed.

We took John for his speech therapy evaluation. There isn't much to evaluate when his vocabulary is so tiny. The therapist showed us some things to do at home, but we already do all of those things. So, I guess he just needs time. Hopefully he will begin to understand more and more and then therapy will be more beneficial for him. For now, he'll continue to go once a week. So, I think we'll also keep his normal ESD preschool class, though we may try to get him in to a morning class so his nap doesn't get interrupted. It's clear that we can't really push the speech thing too much right now, and we just need to give him some time.

We nervously started his Lamictal wean last week. I really don't think the Lamictal is doing anything for him, so I believe that we will be able to wean it completely over the next few months. However, I have never heard of a single case of someone who had the VNS as their only line of treatment for a seizure disorder such as John's. If he can manage to come off of the Lamictal completely and still be seizure free, then he will be one of an incredibly lucky few. We took out 1/4 pill, and will continue to take out another 1/4 pill about every 10 days. If anything feels weird or he gets sick, then we will postpone the reduction. When we get down to 30-40 mg/day, then we'll switch to smaller pills and take out 5 mg (or 2.5 mg) at a time. So far, he has gone from 75 mg/day (3 pills), to 68.75 mg/day(2 3/4 pills). It's been 7 days, and we haven't seen any problems at all.