Tough decisions

I just scheduled my daughter’s first set of botox injections.

This is a common treatment for spasticity, and it’s been around for years.

Still, it was a hard decision for me. We’ve been trying to keep her muscles under control with oral meds for years now. We had some success in the beginning (although she slept all the time), but for the last couple of years, we’ve just been kidding ourselves.

I can’t get her safely into a sling, because she hyperextends and there are arms and legs and head everywhere. It takes three hands to keep her from fish-flopping out, and another two to run the Hoyer – the only lift Medicaid will cover, at least in my state. So, I lift her. She’s fifty five pounds now, and four feet tall. And she isn’t helpful. And she’s STRONG.

So, I’ve been slowly realizing that we need to do something else. So, we tried a different med – it made her throw up. We are trying another one – her doctor just increased the dose, because it wasn’t doing anything.

The research I’ve done – and it’s by no means exhaustive – goes something like this: Prescription. Stronger Prescription. Botox. Baclofen pump. Dorsal Rhizotomy.

After dorsal rhizotomy, I had to stop reading for awhile.

Her physiatrist has suggested the next step might be a Baclofen pump. I’m leary, because the oral Baclofen has done very little for her. We may try it at some point, anyway.

There is a degree of guilt with every decision I make. Am I choosing this for her sake, or for mine? Is this to treat her, or to manage her?

I think the answer is a combination. Katie can’t tell me if she’s in pain, but it’s a pretty good guess that she is, at least some of the time. You can’t sit around with your muscles flexed all day long and not get sore. You can’t be thrusting out of your chair looking for the chance to stretch without it seriously getting to you.

On my part, I can’t keep lifting more and more, taller and taller (I’m 5’3”, and don’t have much vertical leverage on her at this point) without seriously hurting myself. Selfish? Yes. But hurting myself isn’t really my concern, it’s more like background noise.

The real concern, the real thrust behind that horrible phrase, “caregiver convenience” is Katie’s best interest.

What would happen to her if I couldn’t care for her anymore?

We have family that would help, but how would they do it? How long would it be before they were injured, too?

So, we need the mechanical advantage. We need to be able to get her into a lift comfortably and safely.

We’re talking with vendors about what kind of lift system might do the trick. So far, three children’s hospitals have given me the equivalent of a shoulder shrug. Shriner’s said there isn’t a solution for that, but if you come up with one, you’ll be rich. (As if I wasn’t already motivated!). Gillette Children’s said the solution is not in the lift, but in controlling her tone. That’s as good an answer as I’ve gotten so far.

So, we’re going to try Botox.

If that doesn’t help, we’ll try the next thing.

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

Form follows function

Today, I cut the back out of my daughter’s winter coat.

Well, okay, to be fair, it’s her spare coat. She still has one that I haven’t mangled. I have to admit, I’m not very good at sewing. I have a mom and a MIL that are both famous for their work with fabric, but my skill falls more into the ‘rectangular curtains’ level. But hey, what I lack in talent I make up for with enthusiasm.

Besides, even if it’s a bit of a hash job, it will probably look better than the blanket cape she has been wearing. I can get a regular jacket on her but, like several others tasks, it’s getting to be more and more of a challenge. If I put her coat on before I put her in her chair, it’s not too bad. But this often isn’t practical. As Katie gets bigger and heavier, I find myself limiting the number of times I pick her up. Sometimes, I take the easy route, even if it isn’t the best. Thus, the blanket cape.

So, today I thought, ‘what’s the hardest thing about putting Katie’s coat on when she’s in her w/c? Answer: getting the fabric behind her. Then I thought, how can I modify the back to make this easier? Well, not having to get that fabric behind her would probably be good.

So I checked with my friend (the Internet), and sure enough, there are lots of designs out there for adaptive coats. I looked at a few different ideas, and settled on one that looked pretty easy. Plus, it matched the general style of my sacrificial coat. So, I cut a U shape out of the back, and turned the seam – I didn’t do a great job, but it’s passable.

coat back

Then I sewed the front seam closed (the zipper was sticking, anyway). So, the front is now solid, and the back is connected from the shoulders up. So, it should just slip over her head. Then I can slip her arms in, and tuck in the sides behind her. Okay, awesome!

I sewed the front of the jacket closed for stability, and because the zipper was shot anyway.
I sewed the front of the jacket closed for stability, and because the zipper was shot anyway.

Or… not. Did I mention my sewing skills are kind of iffy? I actually finished the sewing part uninterrupted (which is weird), so scurried off to check out how well this would work. Overall, the design isn’t bad, but it has one fatal flaw.

It won’t fit over her head.

Mom, my head doesn't fit through here!
Mom, my head doesn’t fit through here!

Okay, back to the drawing board. Or in my case, my friend the Internet.