Seizures are a bitch. It's just that simple. These ugly and unwelcomed monsters come and go as they please and startle all who witness the vulgar visitor. And when these monsters decide to leave, only hateful remnants remain, like a badly bitten tongue and lost voices but in some cases, even worse. And of course, the fear... Fear for the next one that will inevitably come sooner or later, despite having no invitation to return. Seizures are only under control until the next time.
I wish these monsters would just choose to wrestle me instead of my sweet Oia. I guess emotionally, they kind of do. So admittedly, I've been a bit on edge in recent days but when the average record shifts from 2 seizures a year to 2 in 10 days, many emotions settle into a parent's heart. Worry and concern reside at the top.
Just ten days ago, Oia had her first daytime seizure. (All seizures prior have been nighttime seizures.) Had that particular day not been a canceled day of school due to inclement weather, Oia would have been in her classroom. Away from home. Away from me. That makes me uneasy. The second seizure in the 10 day period occured once she was asleep for the night. Both seizures were brief in duration, lasting up to a minute and a half, and both left her unable to speak for a short time afterwards. She tried but words wouldn't flow and lips didn't move.
The consensus is that this little spurt of activity is attributed to Oia's growth. We have followed orders and up'ed her Trilepal dose twice within the last two weeks and now it's a wait-and-see. Naturally, we hope this is the correct dose for now. We'll soon find out. In the meantime, I'm still watching her like a hawk, questioning her every move, analyzing her every look, kissing her sweet cheeks far too many times a day while asking Are you ok? and I'm still resting my hand on her chest every time I check on her throughout the night because yes, I did that long before any seizure monster came along... I think Momma's just do that regardless. But Oia will be alright. And things could always be much worse.
Oh honey, I hate your news but am glad you posted to update us. I am thinking of you guys (all y'all to you Southerners).
ReplyDeleteGlad you're still over there, GingerB... Email me.
DeleteDamnit. :(
ReplyDeleteOur daughter has CP and her seizures resurfaced when she was 8 - with a vengeance. She had infantile spasms as a baby but I'd never seen a tonic clonic before (including the temporary paralysis afterward) so that took a few years off my life.
ReplyDeleteSince she is tube-fed, we were able to shift to the Ketogenic Diet. It worked for her; we went from sometimes 1-3 seizures a day to 1/week to 1/month to no seizures now for almost two years. I can't say it's a permanent solution (because the story gets rewritten every time I think it's finished) but we recognize the blessing of the reprieve.
I have a blog myself from a Dad's POV, if you have any interest: http://screamingbansheedad.blogspot.com.
Thanks for your thoughtful insight.