Seizures are a common feature of Zellwegers. Elianna has been having them for sure since we came home from the hospital (and likely before, just no one saw them, it is hard to distinguish in babies, though I did once see what I thought was one).
Sometimes the seizures seem to coincide with the blue episodes/apnea (where she stops breathing), other times not. Her seizures have changed a lot over time too. The current ones have a few different flavours, some where she just looks like she's having a big stretch, some where she flinches repeatedly, and some where they make her cry involuntarily (these are the worst to witness because even though she isn't aware it's still hard to hear and there's not much I can do).
This morning she had a crying seizure at 5am (first time that's happened during sleeping hours) and by 8am she'd had a total of 7 of these crying seizures. That's how I got onto this subject in the first place.
I often go through the day is such a haze I don't have the ability to count how many she's having, because every day blurs together and the rhythm of each day (pump/feed, do a few things before the next one, pump/feed, wash pump dishes and repeat) makes it hard to keep track.
So, today I got a picture of what is going on, since one woke me up and I looked at the clock and then had my alarm for getting up give me a definite time frame to count through. She's had another one as I type this blog post.
She is on an anti seizure medication but we need to give it a couple of weeks to take full effect. So far it doesn't seem to be doing much but we are hopeful it will help.
- Posted using BlogPress from my iPhone
No comments:
Post a Comment
hey! thanks for leaving a comment! it lets me know that people really are reading this blog!