Connor does not take particularly well to medication changes.
I figure that maybe he feels something is "off" in his world when we mess with his medication levels, and in protest he decides to stay awake forever or until we give in and put everything back the way he's used to it-- whichever comes first. We're coming down slowly off the Trileptal that was, um, essentially poisoning him, and as a result he stayed up until four-thirty in the morning yesterday. No amount of diaper changing, repositioning, lullaby singing, or (after about two am) begging and pleading could move him. Finally he gave up just as the sun was coming up and fell asleep. Then he proceeded to sleep in until two in the afternoon, canceling my plans for the rest of the day.
Sigh. At least I got to sleep in too.
Thankfully he fell asleep easily tonight-- I was sort of expecting him to be nocturnal again. He didn't have any big seizures today, either. I'm hoping that as we continue to taper off the Trileptal we'll see fewer of those as well as a reduction in the little seizures. We're still processing the new information about Connor's seizures and getting used to the idea that he's probably been having hundreds more than we thought. It'll take us a little while to readjust, so bear with me. I'm still kind of hoping that his EEG will show these aren't seizures, but are just part of his cerebral palsy or something-- as unlikely as that is.
The good news is that if he's been functioning this well while having hundreds of seizures a day, he'll probably make some big strides once he's not having all of these issues. I can't wait to see what new incredible things he'll be doing once he's not dealing with all of those little "pauses" in what's going on around him!
5 days ago