Monday, November 22, 2010

Was It, Or Wasn't It?

Saturday night I sat with Joy on the couch, helping her brush her teeth as per our bedtime routine. Joy was very tired, drifting toward sleep. Then all of a sudden, her legs made a swift jerking motion.

Any other kid, and my first thought would be that it was the kind of jerk-awake thing that happens as sleep threatens to overtake you. But since it's Joy -- first thought was: seizure?!?

I asked JoyDad if he'd seen that jerky motion, and what it looked like to him. No, he'd been looking the other way... but that reminded him, at snacktime earlier in the day, Joy had zoned out for a few seconds. It felt somehow beyond just lost-in-thought, really seemed "not there." And he'd briefly thought: seizure?!? but then she was back and it slipped his mind until my question.

So, was it or wasn't it?

And, if it was, what was it about?

If it was, we've got several potential culprits to consider.

One thought is that she's been growing like a weed, and it's been a long time since we upped her seizure meds (no change in dose since the seizures stopped over two years ago.)

Another thought is the whole thing about the ramifications of switching between manufacturers in the use of generic epilepsy drugs. Since I wrote about the issue in July, our drugstore has switched manufacturers on that particular medication every time we have renewed that prescription. Every single $*#&% time! And we cracked open the newest bottle from the latest manufacturer just a few days ago.

Yet a third thought is the Abilify. Yes, even though I said I wasn't going to tell you, I'm telling you now. We started a couple of weeks ago and it has not gone as we hoped, which is an whole 'nother post in and of itself. But she's still on it as of this writing. More important to today's reflections is that Abilify does have a seizure-caution in the package-insert, because one person did start having seizures during the clinical trial, which could easily have been pure chance due to the population -- or not. We did get the OK to start Abilify from Joy's pediatric neurologist, who didn't think it was likely to change her seizure threshold. But Joy has proven to be unusually sensitive to Abilify in a number of ways, even at half the dose of the smallest pill.

So maybe it was. But maybe it wasn't. We didn't see anything at all seizure-ish on Sunday.

For now, we're watching and waiting. And hoping and praying.

We'd love it if you'd join us in the hope-and-pray part.

11 comments:

Lynn said...

I'm in on the hope and pray part. Just reading what you wrote, my kneejerk reaction is to think the worst...but that's pretty much my kneejerk reaction to everything, so don't mind me. Hoping and praying...

redheadmomma said...

hoping & praying...

Chelli said...

Hoping and praying and totally relating...

unOtherOne.blogspot.com said...

I am directing all sorts of positive energy your way, beyond and above — and to all those ever vigilant parents out there really — but to you right now especially.

Professor Mother said...

Hoping and praying along with you...

pixiemama said...

Hoping, hoping, hoping.

And sending you lots of light and love. This is so hard, the guessing - the tracking every possible symptom.

bbsmum said...

Sending all my best thoughts your way. Hoping.

TherExtras said...

Been joined in that effort for a while. This crowd and the one that supports y'all in real life are a powerful force. I'm preparing for you to forget to follow-up on these concerns and move onto other stuff.
Barbara

JoyMama said...

Thank you, friends! We didn't see anything suspicious on Monday either. Onward to Tuesday, still in vigilant mode.

BabyWeightMyFatAss said...

hoping and praying as well..

JoyMama said...

Thanks BWMFA -- and welcome! (Half-marathon-runner? Wow. My longest race to date is 8k).

No more suspicious signs, a full week later. Powerful prayers, this community has!