Mia is back on the Botox!

Many years ago, we decided to give Mia injections of botulinum toxin, which is, of course, known more commonly as Botox® (it's a registered trademark, so I don't want to get in any trouble!).  She first got it done in 2006, when she was only 4 years old (Jeebus, tempus fugit), as I wrote about here, and again in 2012. After that, we decided to stop doing it, because diminishing returns started to kick in and we didn't want to keep doing it to her (she didn't have any side effects, but if something isn't working, why keep doing it?). We did Botox partly because she has a twitch in her leg that bugs her, and we hoped that Botox would help alleviate that. It did, but not to the extent that we hoped. So we stopped doing it and hoped she could live with the twitchiness.

I've written about her twitch before (at least I think I have; it's been a while). It's not clonus, as far as anyone who knows about this stuff can tell, and nobody is sure what it is. Mia is, as I've said before, a bit of a medical mystery, like a lot of people with traumatic brain injuries, because every injury is different and has different consequences. Her muscles remain very tight, so it's probably just her muscles twitching because they're trying to relax and they don't know how. She doesn't really twitch on a schedule, just kind of randomly. She will be twitch-free for weeks, then, all of sudden, it starts up again. It doesn't happen all the time when she's in a period of twitchiness, just enough to look annoying to her. But, like everything that she has to deal with, she just deals with it. We continue to give her baclofen to help her with her muscles, but there's only so much it can do, and we never want to dose her too much, because everything she takes is a relaxant in some way and we don't want her being a zombie.

So we stopped giving her Botox, and life went on. She twitched, but it never got too bad, and we hoped that it would continue to just be a minor annoyance. However, about two years ago, she went through a period when it was really bad. She was twitching constantly, to the point where it was keeping her awake at night. Usually, when she had episodes, calming down enough to go to sleep helped, but this time, she was lying in bed on her side (we put her on her right side, and it was her right leg that was twitching) and her leg kept moving. When we would go in the room in the morning, she looked miserable and we could tell she hadn't slept well. She was sweaty a lot, because she was moving constantly, and she just didn't look happy at all. We knew it would go away eventually because it always did, but in the meantime, she was not doing well. So I called her neurologist and asked about Botox. They referred me to the physiatrist at St. Joe's in Phoenix, who does this sort of thing. A physiatrist is one of those specialists who I hope you never have to use or know anything about, but if you're someone who needs one, then you know all about them! It seems like Phoenix does not have a lot of them, but there's one in the neuro building at St. Joe's, so whoo-hoo! I called her office, and then ... you know what happened! Insurance happened!!!!

Yes, the time I called about getting her a Botox shot to the time she actually got a Botox shot was about 7-8 months, because of insurance (well, and the confusion of one of her nurses, but that had to do with insurance). She took Mia's insurance information and got started on the approvals. After a while, I had to call, because I hadn't heard anything. She said she hadn't heard anything from the insurance company, which may have been a lie, but what are you going to do? Then, Krys changed insurance because her work ... sucks? I called back with the new insurance information, and that's when the fun began, because after a while, I called back and the nurse claimed that she didn't have the new insurance information, because of course she didn't. I told her what the new insurance was, sent her scans of the new card, and waited again. It took her a long time to figure it all out, and then, she had to get Mia on the schedule. So, she got her first injection in late 2023, well after the initial twitchiness that inspired the call had abated. Of course, she had gone through several periods of calmness and twitchiness since then, but nothing as bad as when I first called. So I still wanted to do it, but it was a bit frustrating that it took so long.

It's hard to describe the twitchiness to anyone who hasn't seen it. I have some videos of it, but they're on my phone and I don't know how to get them here. The leg just jerks up a lot, and she can't stop it. When she's lying flat, it trembles a lot instead of jerking upward, and she tries to stop it by holding the top of her leg, but she can't. The Botox does alleviate it a bit, but not to the extent that it stops it completely. And, of course, Botox wears off, so we've been going every few months to get more. When she first had it done back in the olden days, she was much smaller and couldn't get as big a dose. The doctor this time was able to give her a bigger dose and focus more on the muscle (the anterior tibia muscle, in case you want to know) in her right leg that twitches. At the most recent injection, she did the hamstring on the upper part of her leg, too. That seemed really tight, and she agreed. The doctor also suggested that she get an ankle-foot orthotic, like she used to have back in the old days when we thought she might be able to walk with assistance. An AFO helps stabilize her foot, and the doctor thought if her leg was held in place, it would help the Botox spread through the muscle better. I'm not sure if it has, but last year, she went back to the dude who did her orthotics a while ago -- he checked his records, and the last time she was there was in 2015. She doesn't love wearing an AFO, but she doesn't mind too much. She wore it in the fall, but over the winter, she wasn't wearing it because she can't wear it with a shoe and I was worried about her foot being cold. She can't wear a shoe because this is what it looks like:

On the top of the foot is a turnbuckle, which you can use to secure it on the foot much better. It's obviously impossible to fit a shoe over it, so we don't. I think she'd be ok without a shoe on in the winter (it's Arizona, after all), but it does get chilly in the morning when she goes to school and the room she's in always seems cold, so we were leaving it off and putting a shoe on her. Recently, she's been wearing it to school because the weather is better. Of course, once it gets really hot, we might leave it off because it's big and bulky and she has to wear that long sock, so we don't want her getting too hot. Such is life in the desert!

So that's what's going on with Mia. I know I rarely update here because her life is pretty stable, but Botox injections are a pretty big deal, and I thought anyone who actually pays attention to Mia might want to know about it. Her life is about to go through an upheaval, though, because she's about to finish school. I'll probably have to update here a bit more!