tough week

The VNS isn't helping at all at the current settings. That first day, it seemed like we could stop the clusters. Now I'm not so sure. In fact, sometimes it almost seems like it causes him to have a seizure. I know that isn't likely, but I hesitate to use the magnet now.
John had his worst week ever as far as seizure clusters go. He had 252 clusters this week. The previous record was 211. A lot of this is due to him waking up for a couple of hours in the middle of the night almost every night. He has lots of seizures during this time. I don't think the VNS is causing this decline, as he already was in this bad state before the VNS was turned on.

So, we're left trying to figure out what is causing this bad stretch. It's either the Lamictal (either outright, or because it keeps him up at night), the diet ratio (our current thinking), the VNS, ongoing fallout from the Felbatol trial, or just coincidence.

So what do we do about it? We can't do anything about the Felbatol or coincidence. We're obviously going to continue with the VNS ramp up over the next few months. The Lamictal is at such a low dose that it is unlikely to be causing any problem. And, we really can't give up on this one. It's one of our last hopes for meds. The diet is a mystery. It didn't seem to help at all as we increased his ratio. However, if you look at the data, it appears that he really did start getting worse as we lowered his ratio.
So, the current plan is to keep increasing the Lamictal until it is therapeutic or the side-effects are too bad. And, we'll continue to ramp up the VNS every 2-3 weeks. We don't want to change too many things at once, so we'll leave the diet where it is for now. If things don't improve on their own after a couple of weeks, we'll probably have to give the diet another trial at a higher ratio. We know that it won't make him seizure free, and that is still our goal. So, we have to continue to explore paths that could potentially make this happen. If the diet turns out to be part of a mixture of treatments that work for him, than we'll keep with it.

So, we doubled his Lamictal dose today to 20mg/day. And, we are giving his nighttime dose much earlier (6:30pm), in hopes that this will help him sleep through the night.