Braces or No Braces?

At our recent IFSP, the evaluating PT recommended that we look into Sure Steps. Chances are that if you have a child with Ds you have seen these on your friend’s kids or been told to get them.
Of course, because I have many friends who use them, I assumed we would need them ourselves.
And when the PT recommended them I was sold.
We went to our peditrician to get a perscription only to find that she didn’t agree with their use. I soon found out that there are a lot of opinions on braces.
I argued my point- that she wasn’t a foot specialist and that we only wanted what was best for Eli.
The way I see it is that the braces will stabilize Eli’s ankle (which rolls inward slightly when he stands) and enable him to stand better and begin walking sooner.
My conclusion wasn’t far from the truth, but she referred us out to a foot and joint specialist just to be safe.
We saw Dr. D yesterday and he was simply amazing. He has a close family member who also has Ds, so he spent some of the visit quizzing me on Ds facts and medical concerns. Then he examined Eli. We found that he has Flexible Flat Foot and Calcaneovalgus Feet. Which just means that his foot is flat but he has an arch, and his ankle is super flexible making it to where his foot can actually be pressed up against his leg.
These conditions for children with Ds are primarily due to loose ligaments and lower toned muscles.
In fact, braces can be used to give children like Eli the extra support that they need in order to begin standing or walking sooner. However, these braces can hinder development and strengthening fo these muscles.
These conditions both require no surgery and almost always resolve on their own.
Eli’s ankle has always rolled inward, but it does less now than it did even a few months ago.

Eli stands quite well now, and is beginning to pull up on things in an attempt to explore more stuff around him. I’m still conflicted on how to handle this, and I have been looking at AFO brace or SMO brace options. And I haven’t read anything negative about them at all. So braces or no braces?
It makes me nervous to even say that, but when two doctors seperate doctors tell you they are against treatment for these two conditions, it makes you think.
I certainly worry about when he will walk, but I also know that building up his strength and endurance are important for walking as well.
For now, we got him some stride right shoes that offer a bit more support for his ankle: Grayson shoe and Elliot shoe.

What do you guys think? Would love to hear others experiences and opinions! 🙂

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20 Replies to “Braces or No Braces?”

  1. Are these the awesome braces that Hayden (I think that was the kid’s name) was wearing at Eli’s birthday party that I was jealous of because I was wearing a boring black brace?

  2. Luca had Sure Steps for a short while (less than a year) when he was just beginning to walk, he walked at 18 months. He seemed to gain a sense of confidence when he wore them and would make more walking attempts… they definitely stabilized his ankle (we used them with the high top stride rite shoes as well… the shoes themselves didn’t seem to be enough). Having said that, we did not have him wear them all the time and did PT to strengthen his legs. Now he wears a small orthotic shoe insert to help him with his pronation and stabilize his gait, but he does not require ankle support and he’s a running, jumping, dancing, kicking machine! 🙂

    1. Thank you for your response! That’s what I hear a lot of- The building of confidence and then stability. I’m wondering why two professionals felt they weren’t necessary yet our PT strongly suggested we get them.
      I think Eli will walk pretty early too, he shows great interest in it, but maybe he doesn’t have the confidence yet because of his ankle. I guess we will visit this issue once we get our PT.

  3. We never did any kind of braces at all. Owen’s PT did come with us to see an orthotist one time just to make sure we were all thinking in the same direction (which we were–no braces). We also bought a good Stride Rite pair of sneakers that offered ankle support and that helped him quite a bit with the pulling to stand and cruising. Owen walked at 26 months and has never looked back. He does not need any kind of orthotics or braces. He runs, climbs, jumps, and hops on two feet. We did private PT for about 2 years and for him, that was all the difference.

    We have stayed with Stride Rite shoes. I know they can be pricey, but for Owen they give him the best support possible. And I personally like their customer service!

  4. I never had Caitlin in braces we worked on her muscle tone everyday exercising. I say let them at their own pace.

  5. I’m so glad you posted this we were just told by our PT that my Sofia might need braces as well. These posts are giving me relief in my decision as well.

  6. Holden walked at 18 months…braces never recommended or needed. I think the Stride Rite shoes are great…all three of my “typical” children used them. As for low muscle tone… no one who has met Holden understands “low muscle tone”…he is a pit-bull of a little boy…all muscle. His mother has stronger muscles now from dealing with him (smile). It’s so important for muscles to be used to be strengthened…so as a grandma who’s raised 3 of her own and has 5 little blessings now coming up…I would encourage you to let him build up his muscle strength with use of the muscles. You said yourself that you can already see that the ankle is stronger…and that’s happened without braces. I have to smile as I write this…it won’t be long before you’re worried because he’s running everywhere and getting into everything!!! Relax and let everything happen in its timing… sounds like you have the doctors on your side to do this.

    1. Lol yeah I know you are so right!! He’s already keeping me busy with this crawling business.
      But it is encouraging that your LO did so well without them. Eli does have low tone but he is getting stronger all the time. 🙂

  7. we did not get braces for Rachel. her PT in NC wanted us to get them but I didn’t see the need. I did not “see” anything wrong with her legs/ankles. one ankle went in a little more than the other but that was the only thing that seemed “wrong” to me. she walked by about 16.5 months adjusted age. she never had a confidence issue and still doesn’t!!

    1. Yeah I mean I didn’t think anything was wrong with his feet until the ortho messed with him. I knew his ankles turned in a bit but I wasn’t super worried until our PT recommended them. :/ good news though about your LO. Makes me feel better about our decision.

  8. Ashley, I JUST asked one of our PTs about sure steps the other day. One place we go for therapy nearly every kid wears them, the other place Neely goes, hardly no child wears them.

    She says there are situations where she recommends them but usually not. She told me that the thinking has changed over the years. She related to years ago, when I was learning to walk, parents thought all babies had to have those leather high top shoes. And of course with our babies they recommend barefoot walking! 🙂 So many decisions! Ha! Though we are not quite there yet, they do seem like they might be a hindrance.

  9. I know that the thinking was different 20 years ago (can’t even believe I’m typing that number!), but Jason did not wear any sort of braces. He walked at about 16 months and has built up muscle tone over the years that they told us he’d never have. You can see the muscles in his arms and back from across the room! We always had him in Stride Rite shoes and loved them. I’m not sure if their policy has changed over the years, but they used to replace shoes that wore out before your child outgrew them. Jason’s feet grew slowly, and boy was he hard on shoes! They replaced shoes for us quite a few times.

    My advice – be patient. He’ll do things at his own pace, but he’ll do things that amaze everyone! The muscles – and determination – that he builds up along the way will serve him well.

    1. Thanks girl! 🙂 Yeah, I think I am just going to try not to stress about this and see what happens. Maybe check to see if insurance even covers them and see what our PT thinks before we do anything else. 🙂

  10. It is a hard decision! Luke does have sure steps, I went back and forth about them, but decided to see what they did for him (it helped that insurance covered them too, so expensive otherwise, especially just to try). We got them right around 18 months, and didn’t like them at all at first. He wasn’t walking yet and they made him clumsy. And my other kids were always barefoot or in Robeez, so I was still stuck on that idea. He started walking about 22 months, we tried them again and they seemed to help him stabilize him a little in the beginning of walking. Now he is almost three and he does still have them (new ones,because his feet grew). I’d say he wears them a little bit, if we go somewhere he will be walking a lot we may put them on. He is mostly barefoot still. We also use stride rite, with and without braces. I do notice his ankles/feet turn in a bit and he walks with his toes pointing inward a bit. I have been thinking about seeing a foot specialist though too, to better understand the whole situation.

    1. Thanks girl- your advice and experience means a lot.
      I guess that is what I need to do- see if my insurance even covers that!! lol
      If you need a good foot specialist let me know 😉 He’s in Katy but so worth it. 🙂

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