Spasticity Management

Ben is in another set of red casts. His gastrox (calf muscle) is really tight again and I felt another round of serial casting was necessary. Luckily, I have access to some really great people and managed to get him scheduled for casting within just 7 days of my first call. Amazing!

But...the more serious issue is that he is SUPER TIGHT again. And I mean tight. The PT who did his casts today couldn't believe how tight he was. (She only sees him when we do some sort of spasticity management, she's not his regular PT.)

We're scheduled to have a conference call with his physiatrist in a couple of weeks to discuss our options for dealing with Ben's spasticity. So in light of that call, I'm trying to learn as much as I can about the different methods used to manage spasticity. I asked the PT today for a head's up on what I should be looking into.

So far, to manage Ben's spasticity, we've been doing stretching, botox and serial casting. Basically, the minimally invasive stuff. In the hopes of managing it well enough to put off surgery as long as we can. But, that doesn't seem to be working too well.

So, his PT suggested that I read up on baclofen pumps and selective dorsal rhizotomies ("SDR"). Wasn't quite expecting that today!

That doesn't mean that I haven't thought about these options, I just wasn't expecting to hear that from the PT today. The Centre that currently manages Ben's spasticity is considered to be quite conservative. So it was a bit shocking to hear SDR come out of her mouth.

I've been thinking about SDR's alot lately. Ben is a prime candidate for one (i.e. mostly affected in the legs and both legs equally-affected). But I'm scared to death of the rehab after. Ben is not the most cooperative kid in PT. Right now, we're pretty much doing whatever he wants at a PT session in order to keep him as happy as possible. I can't imagine having to do many PT sessions a week.

Anyways...the PT told me to check out Gillette's website for more information about spasticity management so I did. If you're dealing with spastic CP, you should too. It's quite an interesting read. Here's the link.

I'd love to hear from any of you that are dealing with (or have dealt with) this. To me, the parents are the true experts...especially the ones that have "been there, done that". You can either leave a comment here, or send me an email at aboutthesmallstuff at hotmail dot com