I had my phone ready to record Rett episodes all day, but nothing crazy happened. Instead, I got a photo of Abby not doing anything too crazy at all, which was nice. Well, now that I look at it, her lips aren't exactly pink, but that's okay. It was a nice day. Tomorrow will tell if this seizure "phase" is over.
If anyone has any insight into these seizure patterns, I would love to hear it. I don't think there is a trigger. She does well for several weeks, then she starts having a seizure or so every day for 4-7 days. Those seizures are all short, about 20 seconds. She stops breathing, lips turn blue, non responsive, eyes roll back or stare, her tongue is doing something weird (i can't really tell what, but it sounds like something is happening in her mouth), and she sometimes vomits. When it's over, she is out of sorts for about 15 minutes (very jumpy and limps are flailing) and then she sleeps for about 30 minutes. When she wakes, she is back to normal. I haven't caught these episodes on an eeg. Has anyone's daughter experienced similar episodes? We've increased her Keppra, but they still happen. We have also given her Klonopin during the week when she has these episodes, but it didn't stop them either. I think we may need to get them on an eeg before attempting to increase meds again, or just deal with them. She sees the doctor in a couple weeks.
My post was going to be about how nice the day was because I was expecting to have to deal with seizures, but instead we spent the day hanging out and later listening to a webinar about the IGF-1 trial. I got a little sidetracked. Even though she didn't have any seizures today, they seem to still be on my mind.