John ended up having 40 seizure clusters on Friday. It got so bad, that I took the afternoon off work to come help watch him. He was completely fine between the seizures, so we didn't give him any "emergency" drugs or take him to the ER. In both cases, he would just get a big dose of benzodiazapenes, which would wipe him out and wouldn't help his seizures anyway. So, we just tried to keep him safe. We knew that the weaning of the felbatol was the culprit in this, so we probably should have given him a little felbatol. We couldn't bring ourselves to give him any more of that drug, though. So, he officially went drug free again on Friday.
He got slightly better on Saturday (33 clusters), and again better on Sunday (27 clusters). This is still far worse than what I consider his baseline of 15 clusters and 40ish seizures. Hopefully he'll continue to improve.
He started Lamictal on Sunday. It will take a couple of months to know if it's doing anything. Right now he takes a tiny pill only in the morning. At this point, we'll consider it a success if he doesn't have a bad reaction to it.
It seems like maybe his seizures are changing a bit again. I think he's having more absence (staring) seizures. Plus, some of his seizures now are just a general tightening of the muscles, rather than a drop. New seizure types either mean he's just getting worse, or it sometimes means that the brain is trying to rewire, which is good. So, it could be bad or good. I doubt it's due to this miniscule amount of Lamictal he is taking - but it could be. Lamictal takes ~6 hours to reach peak levels in the blood, and has a half life of 30-36 hours. So, I guess we can hope for a gradual improvement over the next couple of days.
