|Allie riding a mechanical horse during physical therapy|
Allie had a check up yesterday with her physiatrist who monitors her physical development. We mostly discussed three topics: bracing Allie's right foot, a emerging length discrepancy in Allie's legs, and what else we should be doing.
Last week, Allie got the AFO that her PT recommended and has been wearing it a couple hours a day. It hasn't made a world of difference but when she's walking slowly it seems to make her more aware of putting her right foot all the way on the ground. Our goal with the brace is to get a "heel strike" where her heel touches the ground before the rest of her foot.
I was excited to hear what they physiatrist had to say about it.
Much to my surprise, the physiatrist hated it and told us to take it home and throw it away. She thinks that Allie's range of motion is really good and that the brace is just getting in the way. She said that when she walks without the brace Allie uses all the correct muscles and her foot is in the right direction. However, when she walks with the brace she isn't using the muscles in her foot, and not using these muscles will ultimately make them weaker and make her more dependent on the brace.
The doctor did a test with the brace. She put it on Allie, made sure it was on correctly and her heel was all the way down in the brace, let Allie run around for 5 minutes, then she examined where her foot was in the brace. Her heel had crept up in the brace and was disguising that her heel still wasn't getting all the way down. So, not only is she not getting a heel strike, she's potentially weakening her foot and hurting her gait by wearing it. Not exactly what we were going for.
The physiatrist thinks that the primary thing messing with Allie's gait is increased tone in the gastroc muscle in her calf that only kicks in when Allie is trying to use her foot. This increased tone makes it hard for Allie to get her heel all the way on the ground when she is walking or running. The doctor said that there are three options for what we can do.
- Nothing. She said that Allie's overall gait is pretty good and since she is using the correct muscles and not hurting any joints with the way she walks now, we could just ignore it entirely and see how things progress. She also said that the scientific literature is starting to indicate that getting a heel strike at Allie's age is "over rated" and that it may not be as big of a deal as was previously thought. She recommended that we keep stretching daily and encourage lots of physical activity. If we choose this option, she should come see her again in 3 months to reevaluate.
- A more intense customized brace. We could try a stronger brace that would firmly hold Allie's heel in place when she walked. However, the doctor cautioned that this kind of brace is often uncomfortable, still may not give Allie the form that we're hoping for, and may also lead to a weakening of the muscles in her foot.
- Botox in just her leg. We told the physiatrist all about Allie's negative experience with Botox in her arm but the one nice thing Jonathan and I had to say about the experience was how well it worked in her leg. The doctor said that she wouldn't recommend getting it in Allie's arm again but a treatment on just her leg could help even out her gait at least temporarily. However, she cautioned that there is only a chance that it would lead to a sustained gait improvement. Botox would give Allie a chance to establish normal gait patterns and this could be helpful if later in life she wanted to do a tendon lengthening surgery that would more permanently address the issue. Also, since the Botox would be just in her leg, she wouldn't necessarily have to be sedated. The doctor did warn though that being held down and having burning injections administered can be pretty traumatic for kids and for that reason she would suggest having her sedated. If we went this route, we could do the injections as soon as a month from now or whenever we thought it would be best for Allie.
While Jonathan and I haven't decided yet, we are leaning towards doing nothing and maybe considering Botox in a couple months. More thoughts on this coming soon.
Leg Length Discrepancy
During the exam, the doctor noticed that Allie's right leg is 1 cm shorter than her left. We had never seen this before and it is something we will watch in future appointments. If the discrepancy is an absolute length difference then it is basically not a problem. Lots of normal healthy adults have a 1 cm difference and it never interferes with daily life. She even noted that there is a mechanical advantage for Allie to have a slightly shorter right leg since her right toes don't lift up as high as the left toes, so having a little extra height in her step makes it less likely she'll trip.
However, we will have to address the issue if the discrepancy continues to grow. She said that there are surgical ways to lengthen the shorter leg, but they are invasive and painful, and there are ways to temporarily stunt the growth of a longer leg by stapling growth plates in the leg. This would constrain the growth in one leg until the other leg could catch up.
We don't need to do anything about this for now other than keeping an eye on it.
What Else Should We Be Doing?
This is always my big question for the physiatrist. This appointment we got a glorious answer: nothing. She thinks that Allie is growing and developing well and that we are doing more than enough to keep on top of things. She recommends that we continue regular PT and OT and that we consider repeating the KKI constraint therapy program next year.