Musings of a Marfan Mom

Ankle-Foot Orthotics

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Baby J has been dealing with ankle weakness his entire life. His wasn’t bad enough to prevent him from standing or walking, but he’s definitely not what I would call a graceful walker: he constantly trips over himself and his toes still drag sideways. Our biggest concern with his ankles though is that they are simultaneously turning inward (pigeon toes) and he’s walking with one foot in front of the other, like he’s on a tightrope.

We *finally* got a physical therapist from our state’s early intervention program to come to our house to evaluate J. That was on Friday. She spent a couple minutes looking at him walk and asked me what our concerns were. I said we thought it might be time for AFOs (ankle-foot orthotics) and she immediately agreed. She just happened to have a few with her and lo and behold, one pair fit Baby J pretty well! So, he’s got these on loan till his orthopedics appointment in two weeks.
AFOs on a toddler
It was amazing how quickly Baby J took to wearing them! They worked too…when he only had the AFOs on. But they’re slick and we have hardwood floors, so I needed to buy shoes for him to wear overtop the braces. With the shoes on, he’s back to walking pigeon-toed. I’m not sure if this means he’ll need to wear a different type of AFO or not.

The PT has considered two types. The one you see J wearing above goes to just the ankle. It’s nice because it allows for some normal ankle movement and you can find shoes at the store to fit over it, but it won’t correct the tightrope walking. The other type we discussed are AFOs that go up to the knee. These would correct both of J’s walking problems, but they would not allow normal ankle movement, which means he would walk kind of robotically (think Forest Gump). AFOs are apparently also controversial, and not all doctors will prescribe them.

I’m anxious to see what our orthopedist will say when we go see him in early June. I don’t see a downside to trying these out but I’m curious as to which type might be best for J and whether there is any research about the use of AFOs in people with Marfan syndrome. I know back braces rarely work for us in terms of preventing scoliosis surgery and I wonder if it could be similar with AFOs.

Have you or your child used AFOs? What was your experience? Any suggestions for us?

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13 Comments

  1. I’ve used AFOs since I was 10. I have a peripheral neuropathy that causes problems. My muscle tone is actually really good, because my nerves don’t have an off switch, but my conduction speed is awful, so my feet don’t do what I tell them to all that often. I have a bit of foot drop, but my biggest problem is that my ankles turn out all the time. Without the braces I fall constantly, with them, not quite as often.

    I’ve always used solid AFOs that go from just below my knee to about mid-foot. My current pair has higher sides than normal at the ankle, and that does a better job at keeping my ankle from turning out. I’ve always worn men’s (they’re wider) high top tennis shoes over mine, I find Nike are usually the most likely to fit.

    It’s very important to make sure that the AFO’s fit properly and are not rubbing. With a growing kid that can mean a lot of appointments to readjust them, some orthotists are great about it, others not so much. We weren’t careful with mine for the first few years and I ended up having to have surgery to remove bone growths when I was in high school. I’ve been very careful since then and haven’t had any further problems.

    The fact that the braces helped some and then he went back to his old habit once you had shoes on him may just mean that he’s gotten into the habit of walking that way. He may not need the full braces, or he may need them just long enough to help train his gate a bit. If you can find a good orthotist he should be able to help figure out what will work best for him at this point.

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    marfmom Reply:

    Thanks Tam! This is good information!

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  2. I don’t know anything about AFO’s, but would getting some sticky-bottom socks work instead of shoes for in the house? They’re lighter and thinner than shoes, so that might make a difference.

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    marfmom Reply:

    Oooo good idea! I will have to see if I can find some. Thanks! Another mom said her orthotist put rubber traction on the bottom of the braces for house-walking, but I can’t do that till we get his custom ones in a few weeks.

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  3. Both of my girls had to wear AFOs. When looking for shoes you may have to go for either a size larger and or wider fit. One trick that was helpful was to take the insole of the shoe out to adjust for the new height difference of the foot a that the shoe is not to tight across the top of the foot. They wore both the ankle and knee high AFOs. For us the one pro for the ankle was that it was a slip on with no strap/buckle and made shoe shipping easier. Hope this helps.

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  4. If you decide to go with AFO’s make sure Baby J gets PT or at least time to move and use his muscles without the braces. I have used AFOs a few times over the years and in the end have decided I don’t care for them. The biggest thing I noticed is that my already Marfan weak muscles get even weaker with continuous use of AFOs.

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    marfmom Reply:

    Yah, that is one concern I have. We’re in the process of finding a PT for him…it’s been a real pain. I figure the AFOs will just become a crutch for him if we don’t do PT at the same time to create a plan to wean him off the braces.

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  5. Good luck Maya and baby J! Have you considered gluing little rubber-type grips to the bottom?

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    marfmom Reply:

    Thanks! We’re going to do that once we get his custom ones. These are loaners from the county so we can’t do anything to them. :-)

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  6. Oh Maya!
    My son, Loizos ( 22 months old) has been wearing AFO’s since he completed his casts therapy – 3 months old. And he will be wearing them until he turns 4 years old! :(

    But our problem is much different than little J’s.
    Loizos was born with clubfoot. You can see the shoes here http://www.clubfoot.com/ if you scroll down. Notice there’s also an abduction bar keeping the shoes together? Well, he only wears them during the night, now. So, he completely destroyed his cot…

    But, Loizos also has weak knee joints. His left knee is benting inwards while walking. The orthotist said that it will be better, in time, cause the fact that he is walking is, on its own, physiotherapy…

    Do you know anything relevant in regard with Marfan?

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    marfmom Reply:

    I forget…were you guys tested for LDS? Club feet are associated with that syndrome. In regards to his knee, I’ve heard from other parents that there is an AFO that can brace up to the knee to help. Only Loizos’s physical therapist will know if that is good for him or not. It does sound like this hypermobility of the knees and ankles is common in Marfan and related disorders though!

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  7. My five year old has had orthotics since 18 months, when she was still not walking without holding onto things. She went from walking to practically running in a matter of days, even without them on. She has had SMO’s, then AFO’s, and she is back down to smaller SMO”S currently, with a thigh to foot solid orthotic for her weak ankle/foot at night. We have seen huge progress in her, and seen a huge difference in her flexibilty and positioning when not wearing them. My son (almost 8) got fitted for AFO’s this fall, because I could see how much he was turning his feet in as he walked (it has progressively gotten worse- so we finally decided to look into it). We have already seen huge progress in his flexibility and positioning too. All that said, I know the doctor who spoke on pediatric orthopedics at the NMF conference in MN (the last one we attended) said he DID NOT recommend long term use of them once children are in school, because the benefits do not outweigh the teasing kids get. Since then I saw a great article about using them in the NMF Connect a few months ago that gave me the impression they are leaning more towards it nationally. I’m excited to hear what the doctors have to say at the convention in August about this! Good luck with everything Maya. In the end, I chose to go with my gut over what I had heard, and haven’t regretted it. And my son’s classmates have been awesome about him wearing them in school and in gym.

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    marfmom Reply:

    Thanks for sharing your experience, Heather! :-) We did meet with a Marfan specialist, possibly the same one who spoke at Mayo, and he also said he didn’t want J using them for “too long” but it seemed his concern was more about the muscles atrophying. I told him we have a PT overseeing it so he said ok and gave us the Rx. I haven’t read anything official from the NMF about them (NMF Connect is a social networking site, so just opinions from users) but I hope that they do. It sounds like a lot of kids have gotten real benefit from them! Are you coming to conference this summer then? I’m so excited for it!

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