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.

Meds and More

And I thought I had a lot of meds-information to absorb when it came to Abilify. Heh. Welcome to the JoyFamily infirmary.

I started feeling achy a week ago Thursday, and Joy began fighting a cold that week. We went downhill from there, and JoyDad eventually joined us on the slide. Monday Joy got diagnosed with an ear infection (and got a not-strong-enough antibiotic that we had to replace later); I got diagnosed with pneumonia. JoyDad joined us on antibiotics later in the week. Much doctor-appointment-ing, wearing of masks, chest-X-raying, etc.

Meds, meds, and more meds! Analgesics for the aches and fevers and chills; codeine-laced syrup for the cough; antibiotics for the infections; laxatives for constipation side effects; sleep aids for brain-racing side effects; more analgesics for headache side effects. Then there were the merely annoying side effects that didn't rise to the level of further medication: loss of appetite, bad taste in the mouth, mild nausea, a diuretic effect. (Not all effects were experienced by all JoyFamily sickos, by the way, as we had different med-cocktails.)

And we thought we were maybe going to be able to sort out the effects / non-effects / side-effects of Abilify? Again I say: Heh.

Fortunately we are all doing better, well enough to go out trick-or-treating tonight. We managed to buy and carve pumpkins yesterday, and I *so* wish I could post the photos! but I'm going to stick to my pseudonymous bloggy principles after all. Joy posed like a pro, hugged the jack-o-lanterns, leaned in next to Rose and gave a wonderful cheesy smile right into the camera. [E-mail me or drop a note in the comments, and I'll send a copy via e-mail. Unless you've never commented before or some such.]

Joy and I also got to go out adventuring on a nearby patch of short-grass prairie. The sun shone with that amazing slant-light you get in northern climes as days get short, and she had such fun zooming around on the paths and in the grass. It's one of those few places where she can run safely as much as she likes, and I don't have to be right on top of her. Plus there was nobody nearby for her to cough on. Just us and the hawk that frequents that area of town, way above our heads. As Rose would say, "Mama, that's FRIGHTFUL!" Because the hawk's name is, in fact, Frightful.

Anyway.

Side Effects are Generally Mild

"Side effects are generally mild and may include..."

How many times have you heard those words, or something like unto them, on a TV ad?

Of course, nobody expects to be the one to get the side effects. I sometimes talk myself out of expecting them even when the chances of side effects are high.

Rhemashope posted recently about the difficult decisions they're facing about epilepsy meds for Rhema -- difficult in large part because of side effects and dependency issues. Mama Edge has posted repeatedly about meds and her guys. Same with Niksmom: poor Nik has had some harrowing stuff around his meds. And these are but a few examples.

Over here, we've had a nice run of stability with Joy's epilepsy meds. It makes one forget how rough it can be to start a new one, or a new combo, and try to track what is working and what is side-effect and what is just the quotidian sliding of switches on her mixer board. Once she's been seizure-free a full year (which, Lord willin' and the creek don' rise, comes up in less than a month), our neurologist wants to talk with us about reducing medication levels. Yipe. Yipe. Yipe. That's change I think I'm going to have trouble believing in...

But that's not actually exactly upon us yet. So why am I writing all this now?

Well, JoyDad had a little adventure this past week. He started on a new medication, prescribed but also available over the counter (OTC), where "side effects are generally mild." You basically don't expect big problems when you take it.

The night after he started taking the stuff, he got a fever & chills, coughing, shortness of breath, had an awful night. In the morning he called the whoever was on-call at his clinic (weekend, of course), only to be told something vague, probably ought to stop taking the medication just in case and call the doctor on Monday. He stopped the meds, started feeling better, didn't actually miss any work, forgot to make the call, convinced himself that he'd been on the wrong end of coincidence and a virus, and re-started the medication.

This landed him in the emergency room Tuesday evening, tight-chestedly gasping for breath and coughing up things one hadn't oughtta be coughing up.

Fortunately he's OK, treated & released that evening, though he hasn't entirely shaken the cough yet. We're intensely grateful to the retired-nurse neighbor who dropped everything on a moment's notice and gave him a ride to the hospital, so I didn't have to cancel a barista and drag the kids along for the emergency room experience!

The drug in question? Prilosec. Common OTC antacid.

Be careful out there, folks, any time you or your kiddo starts some new drug, prescription or OTC or herbal supplement or whatever. Side effects may be uncommon. But with most meds -- they're entirely possible, and you just might be the one to land on the wrong side of the statistics.