The Daughter Chronicles

Sunday, May 11, 2014

Mia's new medication

I finally got Mia in to see her physiatrist, as she's been seeing a bunch of other doctors recently and I haven't had a chance to get her to the doctor. But we saw her, and she checked out Mia's muscles. It's always the muscles!

As you might recall, Mia's muscle tone is very high, which has led to a reduction in her standing to ... well, none, really (she does a bit of it at school, but she's basically sitting in a stander that supports her butt). We have no idea how to decrease her tone, and if it lasts too long, she'll get muscle contractures and she'll never be able to stand again because her muscles will be too short. She's been taking baclofen for some years, which has helped a little, but we were wondering if she needed an increase in the dosage of the baclofen to help her out. Her doctor told us she was at the upper reaches of effectiveness for baclofen, so we didn't move that up. She thought Mia moved fairly well, and I mentioned that part of her problem was that when she was stretching, she seemed scared to move too much because she believed it might hurt her. Mia overreacts to everything, and so when you're stretching her, even if she's reasonably loose, she quickly becomes upset if she thinks you're going to stretch her just a bit more. So she reacts by pulling back even more than before, until she's almost fetal. Mia digs fetal-ness - nothing can hurt her when she's in a ball.

The doctor noticed this too, so she prescribed diazepam. Yeah, that's right - Valium. She believes that Mia's baclofen isn't able to override the reaction she has, but if she were able to relax a bit, the baclofen will help her muscles become looser and she can stretch better. Makes sense, right? Obviously, Valium has some issues, so she started her at a very low dosage - 1 milliliter three times a day. This week I'm going to increase that slowly to 2 ml, but I'm going to go slowly with it. Mia seems to be handling it pretty well so far - when she has a lot of external stimuli, there's not any difference in her behavior, but when it gets closer to bed time, you can tell that she's winding down a bit. Back when she wasn't getting enough food in her, we saw this too, because she didn't have enough energy. Now that she's getting enough food, we think it's the Valium hitting her when she doesn't have anything to distract her.

She's only had one physical therapy session since she started on the Valium, so we can't tell if it's working or not. We can always take her off of it if it doesn't, and right now it doesn't appear that she's reacting poorly to it, in terms of allergies or anything. So we'll keep trying it.

And no, I don't have enough to give it to anyone who wants it. Believe me, people have asked - jokingly, I should hope!


Post a Comment

<< Home