Two nights ago, Jade woke up in the middle of the night - as she often does. I climbed into her bed to help her fall back to sleep. As she drifted off, she had a big body jerk; you know, the kind that you get on occasion when you're falling to sleep?
A little while later, her legs twitched once or twice - the way they do when someone is dreaming. Leg twitches aren't common with Jade, so I'm chalking those up to normal sleeping movements, but the big twitch bothered me. It bothered me because I was really looking forward to saying that she had been seizure-free for three weeks. Could it have been nothing more than a normal going-to-sleep-myoclonic-jerk - the kind that everyone gets? Could that little technicality allow me say that, as of tomorrow, tomorrow she would be seizure-free for three weeks?
Alas, this morning, when she woke early and I crawled into bed with her so I wouldn't need to give her a 06:00 breakfast, I felt the very slightest of arm twitches.
We're back to counting from zero.
Aw, it could be normal sleep twitches, Michael.
It must be nerve wracking because you and Fawn are always on the look out for signs and symptoms. And, understandably so.
I hope for all of you that it's just her body settling down for sleep.
P.S. Thought the post title was about something you did to piss Fawn off:)
The one this morning was definitely an epilepsy-related twitch, unfortunately. Although it's disappointing, she's still doing very, very well. I'm sure we'll continue to make progress.
Time to tweak the diet again?
But nearly three weeks seizure free is an amazing milestone.
It was great to have that long stretch of apparent seizure-freedom.
We may have to tweak the diet, but I can't tell if we should increase the calories, reduce the calories, or increase the ratio she's on...
Maybe we'll fast her for a couple of meals? It could go either way. It's so touchy.
Darn it! However, at least we all now know that the diet works ... with a few tweaks from time to time. Hugs to Jade....and to Halia, Fawn and you too.
The diet's working, that's for sure.
Those twitches at bedtime still freak me out, even though I know they're normal.
OK, this totally sucks!
When I lay with Naomi I wonder every time she moves her foot if it's a seizure and if I should count it! Usually it's just her readjusting but I wake for every single twitch of her muscles!
We're dealing with a new molar and as of today a runny nose (allergies?) Whooping cough is going around our schools, ick!
Happy belated birthday!
Post a Comment