Saturday, February 17, 2007

Anchors Away!

Michaela went to see Chief on Thursday, and it was a really good visit. It wasn't one of those, "I need to see her, so I'll fit her in" kinda visits, but just a run-of-the-mill, "See ya in (enter number here) months" kinda visit. We had quite a few of these generic check-ups last year. But this one was a little different, for me, at least.

See, it's been exactly one year since we started Felbamate.

I mean, A WHOLE YEAR! That's monumental! Before that, she was jumping meds like Anna Nicole jumped suitors! Um....er......but that's another story.....

So, for her to be on the same drug for that amount of time is just really great for her. I mean, super. Just super. And I was feeling pretty uppity that day. Peppy. Yeah, that's what I was feeling: Peppy. Excited to be going to a visit with Chief, with a list of like, two things. Just TWO things! And they weren't even serious issues or anything. Minor stuff. Like, "Can we get this drug in a liquid?" Stuff like that.

Do you realize how COOL that is?

Ok, maybe you can't relate, but just trust me. It was VERY cool.

***

Michaela's just kinda rolling along. She not getting better, per se. But she's not getting worse, either. It's what we affectionately call "Stable." I love Stable. Stable has been my best friend lately. Believe me when I tell ya: I've pampered Stable. BIG time.

But that's all changing. Chief and I had the same idea this go around: we're pushing Stable's comfort zone. I think it'll be a good thing.

Well, I'm PRAYING it'll be a good thing, anyways. This new "rocking the boat" type adventure....

***

Boo's on 2 different seizure meds. That's right. Two. There's Felbamate, and then there's Zarontin. Zarontin is kinda like Linus from the Peanuts comic strip. Quiet. In the background. Yet, very smart. It has been Michaela's anchor drug for almost two years now.

In my lingo, an "anchor" drug is simply a drug that she's taking to help another drug. Zarontin doesn't take care of her seizures by itself. But since it helps a little and doesn't cause any nasty side-effects, we've kept it on board. Like an anchor. Kinda keeping everything from getting tossed in the waves when we're trying to find a more powerful drug that works.

She's had a few different "anchors" in the 6 years she's had seizures. And Zarontin is the latest.

But we're getting rid of it.

See, the theory is that the Felbamate is doing the job of keeping her Stable. It's packing enough bang for it's buck (oh, and let me tell YOU, there's a lot of BUCKS behind that bang---just ask my prescription drug insurer!). Which means the Zarontin may not be needed any more.

And in my book, the less drugs, the better. So, in 5 weeks, she'll be off the Zarontin. And only on ONE seizure med.

That's sweet.

I hope.

***

Now, before you start thinking she'll only have ONE drug to deal with, let me tell you this: Michaela is also on another med.

Robinul. To control drooling.

Yeah, unfortunately, she's drools almost constantly. Almost. There are times when the flow is minimal, or seems to be not there, but if she concentrates on something really hard, she will probably drool even if she hadn't drooled all day. It's just something she can't control very well anymore.

But it is kinda annoying. Hmmmmm. Maybe annoying isn't the right word for it. Or maybe it is......it's just......just......kinda icky. Not pleasant? Does that work? Yeah. It's very Unpleasant.

So, she wears bibs all the time to keep her clothes from getting totally soaked. There are days when we change the bib 3-4 times a day, and there are days when she wears one for the whole day. There's not much rhyme or reason to it. And we've learned to deal with it. Like, wiping her mouth really quick before she plants a kiss on our cheek. Or adjusting the bib to lay on our shirts if she wants to snuggle close. No biggie. In general.

But I can't honestly say that I don't care about it. It's not normal, and therefore just one more thing that sets her apart and complicates life a little. It's really not all that wonderful to absent-mindedly lay your arm on a fresh puddle of drool. When you're running late for church. And you JUST ironed the shirt.....

Yeah, unpleasant.

The Robinul is supposed to help dry her up a bit. We'll take it. As long as she doesn't have any side-effects from it, we'll take all the drying we can get.

***

There's also a new drug we're putting her on: Risperdal.

Risperdal is an anti-psychotic to help her chhhhiiiiiiiillllllll out. Lately she's been very un-chilled. Very hyper. Very CRAZY.

That's our term for it around here: crazy. "Boo's acting all crazy again." "Boo, no crazies!" "Michaela, cool it on the craziness, okkkkkk?"

All the while, she's running around the coffee table, flapping her arms, randomly screaming and laughing at the same time. Or singing Twinkle Twinkle for 45 minutes straight.

The. same. two. lines.

You thought I was kidding on the crazy thing, huh?

So, this new addition to my drug cabinet is supposed to help that. We'll see. I've decided to not give it to her until the Zarontin is weaned completely. Then, if there's any problems that arise, we won't be confused as to what's the culprit.

But, I'm sure hoping it helps her sanity. If it does, it'll be helping mine too.

Because I need some of mine back. Really bad.

***

We're also taking her to see a dermatologist because she's had these weird spots on her back and neck for about 9 months now. They don't itch, blister, sting, or puss. They're just there. But why? Totally random spotting-ness. Last I knew, little girls don't grow spots for no reason.

Well, at least not before 12 or so. And then those are supposed to be on the face, not the back.

That appointment is going to be in March. I'm just curious enough to be anxious for it.

***

In general, things are looking good for Good Ol' Boo these days. And things are changing. But it's good change. Just little tweaks to help her have more quality of life, more ability, hopefully even less seizures. I'm just feeling really good about her right now. She's predictable, her bad days aren't horrid or long-lasting, and we're taking measures to help iron out some rough issues.

Like I said: it was a good visit.

Yeah, "Peppy." I'm still feelin' it.

5 comments:

Thimbelle said...

Wow! I was so glad to see that you found Stable!

Can you point me towards it? I can't find it anywhere on this map I have! LOL!

Seriously - I hope that Miss M. continues to be wonderfully, plainly, every-daily Stable.

Thim :)

Alabamabrands said...

Yeah!
I remember when you were on the drug switching roller coaster and she was "crashing" every few months. I was very scary!

Now the only crashing she's doig is from her over excited, "crazieness" into your coffee table.
I have to say I do like the happy Michaela better (although I feel for you with the "how I wonder what you are" singing).

JSmith5780 said...

Stable is good, definitely, but you also don't want to keep her on any meds that she doesn't need. I wish you luck with the wean.

Regarding the drooling. I assume this is oral motor related? Have you ever had an occupational eval done for her? I know when Connor was having major drooling issues, the OT recommended a z-vibe and a p-tool. Granted he was a LOT younger, but they seemed to help. The chewing and vibration just helped to 'tone' his oral muscles.

You mention flapping and running around. Could she have autism or even PDD-NOS? If she has another diagnosis, perhoas they can tailor her schooling differently and you might see more development. I am pretty sure you said she was in a school.

The spots on her back and neck...are they growths or just spots. Could they perhaps be the sign of something? Yeah, very vague...what I mean is has she ever been checked for Tuberous Sclerosis (TSC). I know that skin patches can be a sign, as well as the seizures and developmental delays. I following the chat sites for TSC pretty closely because Austin has a genetic mutation for it even though he hasn't been diagnosed with it.

OK, way more than you needed. Enjoy your family and hope the Zarontin wean goes well. I'll be checking in to see how she does.
Jen

Adventures In Babywearing said...

I am so glad you are feeling peppy and things are STABLE. I know how good that feels.

Steph

P.S.
If you get the chance, be sure to stop by & participate in a Photo Tag of Your Mom here!

Denna said...

I am glad your visit went well. I am also glad Michaela is in a stable condition. I remember the other days.
I like the happy girl better also.
You are such a strong person, Kelly. I can see Gods grace on you. I love and appreciate you very much.