We're home, with a whole lot of new information and a tentative game plan!
So first of all, we're pretty sure Connor isn't having one, or five, or even seven seizures a day like we thought. Actually he's having hundreds.
While we haven't had an EEG yet to confirm, the doctor is pretty sure based on his observation of Connor and the symptoms I described to him that Connor is having myoclonic seizures about once every minute or two. You can read more about myoclonic seizures over here if you'd like, but basically they're a really quick, short seizure that causes muscle contractions. They're probably the source of the twitching and "startling" we've seen Connor doing over the last few months. While these seizures aren't nearly as dramatic as his larger seizures, they still aren't so hot for his development. Trying to interact with people for Connor right now would be kind of like you watching a movie and having someone randomly hit the mute button and cover your eyes briefly about once every minute. He's probably missing out on a lot of information, and it's probably pretty hard on his body, too. We're seeing abnormal reflexes on his left side all the time right now instead of just after a seizure. Needless to say I am not particularly thrilled about this development.
The good news is that the doctor thinks he might know why we're seeing them now, along with an upswing in the seizures. Connor's Trileptal levels are well above the upper threshold of appropriate dosage. When Trileptal levels are too high the medication can trigger myoclonic seizures as well as cause his other seizures to be worse. It can also cause muscle weakness, fatigue and heightened reflexes-- all of which are pretty evident in the little guy right now. Even if the Trileptal is not causing the myoclonic seizures (and I'm hoping it is) then it's really not an appropriate drug for a kid with them to be taking since it can make them much worse.
So we'll be coming down off the Trileptal over a six week period, starting tonight. We'll ease down by reducing his dose 1ml per week and see what that does to his seizures. Then we can start talking about other drugs if necessary.
And we'd be trying other drugs instead of the ketogenic diet or the vagal nerve stimulator because the epileptologist doesn't believe Connor would be a good candidate for either. The ketogenic diet has a tendency to cause kidney stones, which is the last thing a kid with one kidney needs. The VNS apparently doesn't work well at all for children with white matter migratory issues like Connor's, and there's no point in doing the surgery for him except as a very last resort since it has a much-reduced chance of improving anything.
So we're going to see what happens when we start taking him off the Trileptal over the next few weeks. Hopefully this will improve matters greatly. If it doesn't, I believe the next step will probably be to increase the Lamictal again. If that doesn't work we'll be looking at a drug called Depakote as the next possible medication he'll take.
We're going to try to stay at home while we go down on the Trileptal instead of spending a bunch of time in the hospital. We're hoping the seizures will respond quickly to the medication change, and we have instructions to call up there if they don't start decreasing or they become worse.
So we've got some idea of where we're going now, which I'm thankful for. We'll just have to see what the next few weeks bring.
21 hours ago