a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Tuesday, November 9, 2010

Ortho Appointment: Botox

Oia and her entourage, which today consisted of Rob and I, her PT, and the student PT, all attended her ortho appointment at Kluge. Oia's PT is so involved in our ortho appointments and is always a great support for us. We had some things on our mental list of concerns to bounce around at this mornings appointment. Namely, questionable leg length difference, a hip x-ray, and Botox.

I'll start with the first, Oia's leg length. By quick physical examination long ago, it was mentioned that Oia's left leg (the dominant, stronger leg) was a tad longer than the right. No exact measurements were taken at that time and Dr. R believed that the AFO worn on Oia's right foot makes up for the difference. Our PT measured Oia's legs last week before beginning session and as accurate as she (and I) could tell, the length in Oia's legs differ by at least 1 cm, maybe closer to 1.5 cm. We questioned Dr. R today whether or not this needed to be addressed with a shoe lift of some sort but he felt that wouldn't be necessary at this time. He still believes that her AFO is corrective enough in making up the difference and that this length discrepancy is simply par for the CP course. As I've come to understand, an extremity with tone issues will not grow at the same rate as an extremity with normal tone. So there we have it, something else to keep an eye on. One leg is shorter than the other but no need for concern at this time.

Second on our agenda of concerns was a hip x-ray. Dr. R mentioned once some appointments ago that Oia should get a hip x-ray, the routine procedure around age 3. Oia has yet to have one. Dr. R said Oia's hips were fine and there really was no immediate need much less any concerns but in order to establish a baseline for any future need or shifts in her leg/hip structure, she'll get x-rayed at her following ortho appointment in 3 months. Painless and quick, why not?

And onto the biggest concern that is dangling in front of us which unfortunately won't be so painless is the idea of Botox injections in Oia's right leg. We are about 4 months post casting and subsequent ankle injury. Oia gained some good range in both ankles post casting but in retrospect, it's not for us again. Oia was immobile for too long follow casting due to the stretched and weakened muscles so in our case, the cons for casting outweighed the pros. It makes sense.... immobility in anyone with CP can be more harmful than helpful and in our situation that rang true. Our only other option right now to relax Oia's right leg is to try Botox. Two shots, hamstring and calf muscles. Aside from soreness at the injection sites, the risks are minimal. We have to do all we can now in the hopes to avoid more invasive procedures later down the road. I don't even allow myself to think of those "invasive" procedures now. Scares the hell out of me. BUT, for now, Botox it is. Just need to schedule the appointment... will more than likely have it done this month.

So, that's one appointment down for the week, off to a neurology appointment tomorrow after preschool.


  1. I'm glad things went pretty well. She's a tough cookie, I'm sure she'll be okay with a couple shots. If you can dodge the casting, why not try something new! You never know until you try! :)

  2. I've heard almost all good things about botox and the negative stuff was all children that were completely non-mobile.

  3. We'll be doing hip x-rays too at our next physiatrist appointment (Eli's second set). Good luck with botox, I know it's scary to put our kids through unpleasant things (even if it's for their benefit).

  4. Our babes have so many similarities. We just had an ortho appointment last week and Shelby's left "weaker" leg is already noticeably shorter than her right leg. Looks like we'll be doing AFO's as soon as she starts to stand on our own. I'll be consulting you when the time comes for advice.

  5. My dear, I don't envy your choice. We've had it mentioned a couple times but no one has sought to pursue it and I've been so releived that I don't have to decide about putting poisons in my baby. But I want you to know that every therapist I have raised this concern with has been 100% supportive of the technique - now they have some concerns using it with hands because it is so hard to get the right muscle and some similar issues in the the smaller muscles of the calf and that stabilize the ankle/foot (this will be our issue)but especially with the larger muscles like the hanstrings, the medical folks seem really comfortable with the technique and the results they get. You are both smart and brave and I know you'll make the right choice.