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.