Category Archives: Spasticity

Botox, Part II

So, yesterday Katie had her first Botox shots. We drove up to Minneapolis a day ahead of time. It’s about a four hour drive under normal circumstances, about seven or eight with my girl, because she needs more breaks/stretching/time to sit and eat lunch/etc.

The day went pretty well. She thoughtfully slept in, which is good, because she wasn’t going to get to have breakfast beforehand. We stayed at a very nice hotel, which gives a good discount to the patients at Gillette Children’s Hospital.

On the way out to the van, a man asked, “Going to Gillette?”. Yep.

“We’re here for that, too.” Cool. I love the comradery most of us parents seem to naturally fall into.

“We’re getting Botox today. First time.”

He smiled.
“That’s pretty easy.”

Then he held the door for us because, even though there is a ramp at the entrance, it’s about a four foot square of concrete which steps off in two directions, and the ramp shoots out parallel to the building. So, it doesn’t leave a lot of room to hold the door, keep your feet, and pull a chair through.

(Note to self; look up a good link for ramp guidelines.)

We made it through a small stretch of city to the hospital. Siri is my copilot – I used to get very stressed about finding my way in the urban jungle. Why is it that children’s hospitals are always downtown? Anyway, we got checked in, and signed the many forms, and got to our room.

Roughly seventeen people came through. The procedure was explained four times. We confirmed her name and birthday five times. Then the show was on. Because we were just doing Botox, the only medicine Katie got beforehand was nitrous oxide. Most people would find this no big deal, but honestly, I would rather she had just gotten a shot – having a mask held over her face was NOT FUN.

So, the Child Life specialist tried to distract and entertain her (that didn’t work). I tried to soothe her (that didn’t work). One nurse (?) held the mask over her face (with both hands, and a pretty impressive struggle, right up to the end of it all). Some random guy stood in the background and watched. Two nurses held her legs, and our doctor did the shots in her hamstrings. (That part went okay.)

And tada! We were done. An hour and a half, start to finish. Not too bad.

There weren’t any obvious side effects. The only thing that came up was Katie had a nosebleed that afternoon. I’m guessing it was from the battle over the face mask.

If we get good results (we should know in the next week or less), I think we’d be up for a second round. But next time, I’m going to insist that we skip the nitrous, and go for a light knockout.

Treating spasticity

Spasticity

Well, actually, for Katie, it’s dystonia. My nine year old went from being like a wet noodle when she was a baby – wouldn’t hold her head up, needed to be propped in her baby seat, needed her head supported well past that newborn phase – to gradually getting stronger and stronger. That’s good, right?

Well, I am glad that she has strength. I wish she could use it, though. Katie really doesn’t have any middle ground for her muscles to work in – they’re either totally on or totally off. That is dystonia.

I will use the word spasticity interchangeably with dystonia here, even though they aren’t the same – spasticity usually doesn’t involve that wet noodle side of things, and people with spasticity often experience a reduction of range of motion, or contractures. But, since their doesn’t seem to be much difference in how the medical community treats these disorders, I’m going to lump them together, too. At least for the moment.

By the time Katie was two, I was having a hard time keeping her in her car seat (we hadn’t resorted to a wheelchair yet at that point). Her neurologist said that at some point we would probably need to medicate her for it. At that time, I thought, ‘ I think we’re there NOW’, but I didn’t speak up, and it was another two years before we actually started down that road.

We tried Baclofen, which had to be compounded (mixed into a liquid- only certain pharmacies do this). It didn’t seem to help. It did seem to upset her tummy.

Then we tried Clonazepam – okay, I might be forgetting another drug in there, but anyway, this is what we settled on. Katie was about five at the time.

The Clonazepam helped. But, it also made her sleepy. I didn’t care. She was so much happier, and I was having a much easier time taking care of her.

As time passed, the Clonazepam was less effective, so the dose was raised. It helped again, but made her more sleepy.

We have tinkered with her dose as well as adding other drugs off and on over the years, but have never come up with a good mix to help her have manageable tone and also be awake. Most recently, we tried Artane. Barf city – this made her very agitated, then it made her throw up. So, that’s on the NO list.

Right now we’re trying adding in Baclofen on top of her Clonazepam. The doctor has us taking this fairly slowly, since she was so sensitive to the last drug change. So far, I think it might make her a smidge more sleepy, but that’s about it.

I think the Baclofen trial is probably actually about easing us into the next potential step – a Baclofen pump. This is an implant that delivers a small dose of the drug right into the spinal canal, which is supposed to be a much smoother and more effective dose. I know some people who have had good results from this, but I don’t know if it would help us, since the drug hasn’t so far.

The other suggestion we’ve been given is Botox, and at this point, I think that is worth a try. We haven’t scheduled this yet, but we will probably be doing this over the summer.

What are your experiences with spasticity? Have you found anything that consistently helps improve muscle mobility and decrease pain without being knocked out or nauseous?

I’d love to hear your thoughts and experiences.

Stacy