Musings of a Marfan Mom

Making AFOs

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About a year and a half ago we first tried AFOs for J. They didn’t work as wonderfully as we’d hoped, and our orthopedic doctor was not a fan, so we quit after about a month. Our doctor assured us that J’s ankles would strengthen as he got older. Unfortunately, J’s left ankle has gotten worse, and we haven’t seen improvement in his right. The physical therapist at his IEP eval suggested we try these AFOs because they allow for more natural ankle movement (the lack of which was a major reason our doctor didn’t like the previous AFOs).

Last week I took J to get fitted. He was pretty scared, as anytime he walks into a doctor’s office he panics, thinking something will hurt. It didn’t help when she put on rubber gloves, which is what nurses do before giving shots.

First, J was given a sock for his left foot (we’re holding off on doing a right foot AFO for now):
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Then, the orthotist put in a blue tube:
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Time to wrap with plaster dipped fabric:
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Marking off where the tube was, and other measurements:
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Final cast:
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8 Comments

  1. This is my first visit to your blog and I will go follow you. I remember what it was like getting a cast fit onto my left foot when I was about five. t least, I remember what it was like getting it fitted. Not cool. I understand J was scared, but I really do hope this works.

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  2. Both my kids have that type of AFO and they have worked well for us. We have seen definite improvement from them!

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  3. Hi, Maya. I wanted to let you know they make shoes for AFOs called hatchbacks…Also, our daughter is also having the same issues as your little one and in the process of finding out how to help her. Is this common in kids with Marfans?

    Here is the link for the shoes

    http://hatchbacksfootwear.com/index.htm

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    Alisha Reply:

    I forgot an idea- you can use puffy paint on the bottom of socks to create anti-slippage. :)

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    marfmom Reply:

    ooo good idea!

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    marfmom Reply:

    Thanks! And yes, this is a pretty common issue with Marfan. The concern the doctors have about AFOs is that without PT, our already weak muscles can atrophy further, rendering a person dependent on the AFOs. I’m hoping the type we’re trying now will be helpful, not hurtful!

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  4. There was some suggestion of my son needing special shoes (AFOs sounds right, though I never got far enough to hear a term for them). We went to a PT and I pushed and got them to agree to just watch for now. We see the PT once per month and, thankfully, Spencer’s ankles have been turning in on their own.

    I had no idea of the fitting process and found your post fascinating, thank you for sharing! And thank you for participating in Friday Favorites!

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    marfmom Reply:

    I’m glad that you’ve been able to hold off on them! I’m not looking forward to J getting used to wearing them.

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