The increase in the zonisamide didn't help at all. In fact, his seizures have gotten somewhat worse lately. He's having a lot of small seizure clusters that last 10-15 minutes. And, he's having an occasional bigger seizure that makes him vomit and wears him out for a couple of hours. But, the seizures are once again different and not violent at all. They are obvious to us, but probably not to others unless they are staring right at him.
So, we've lowered the zonisamide back down to 125mg/day and we'll give that a couple of weeks. I suspect we are going to be back on the drug roller coaster soon. Pretty sure Vigabatrin is next. We haven't tried it before, mostly due to a potential permanent side effect having to do with your field of vision. But, the chances of that are small and we have to weigh the potential benefits with the risks, as always.
John has a real issue with not wanting to eat anything in the morning. And, he is totally uncooperative if he doesn't eat. So, he now eats breakfast at school. We tried getting him to eat from the cafeteria but it didn't work out so well. So, he basically eats snacks now for breakfast. Not the most healthy option, but I think parents of similar kids would understand.
We're planning a trip to Japan this summer. John hasn't been on an airplane since he was 1, so it might be a big adventure. Thankfully, in-flight entertainment has come a long ways since then and we have an iPad that we'll load up with movies and games. I think he'll be OK.
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