Does Your Child Wear An AFO, SMO, or Other Braces?

I'm just curious, really. My daughter, Quinn was born full term, was in the NICU, has a significant history and is 19 1/2 months old and was diagnosed with a global developmental delay by neuro earlier in August. She just started all of her therapies (ST,OT, PT) and PT wants her in either an SMO or an AFO on her left leg for balance issues, strength and possibly pain. Quinn can't walk more than a few feet without screaming and begging to be picked up and we believe that it is a pain issue going on with her. She also has a limp, is hypotonic and has an unsteady gait. blah blah blah... She is still undiagnosed but PT says that she meets the criteria for having ataxic cerebral palsy. I'm still doing research into gentetic and non genetic diseases, though. Many people have mentioned muscular dystrophy and I think she seems to have more of Spinal muscular atrophy. Anyways, if your kiddo has an AFO, SMO, or other leg braces, when did they get it? Why? What is their diagnosis? Hypertonia? Hypotonia? Cerebral Palsy? How long have they had it? How long does it take for the braces to come after the first ortho appointment? What is the reason for it? Stretching? Balance? Thanks!!! -Sarah

12 Replies

  • In reply to BearHugz:

    My daughter even ordered a pair for her clinical training for her medical program as she knew she’d be on her feet a lot. They are super comfy and definitely worth every penny that I payed. Love Orthofeet and I recommend them whenever someone mentions having heel pain. Told all my co-workers about them. Simply LOVE them and will defiantly be buying more!
  • Hey, does anybody have a kid with posterior leaf AFO's? Quinn is getting some... it's official... at least so long as insurance approves. WE had our appointment today. He is going to first put one on her right leg, which appears to be more involved and if it works out well, he said he would probably brace both legs with them. Anybody have any experience with these in their kids? Good pictures for pedi patients? THANKS!!! THANKS for all of your help!!! -Sarah
  • Sarah-
    I'm so happy you are getting some answers. Good for you to push for a second opinion!!! It is so frustrating when we feel we aren't being listened to as parents- we see things that doctor's can miss since we are with our children more often.

    I hope you get some answers at her appointment in Oct.

    Good luck!

    Lori
  • Sarah~ I am so glad that you have found some support in your therapist and neuro. I remember the frustrations I felt in all of Nia's nicu unknowns. Although we have a diagnosis I have been dealing with so much frustrations in finding doctors for Nia since we moved to FL. I even traveled to Miami which takes over two hours for her neuro appt. I am just glad that it's not a drive I have to do too often. Good luck. Keep us posted.
  • Thanks guys! we got an appointment for a second opinion on Oct. 5th. When I told PT about this, she was so livid! And she gave us a referral over to another doctor all the way out in Riverside. That's almost three hours away, Hey, for my baby girl, I'll travel half the country away! Anways, we also got another Eval. from Inland Regional so that way her therapies can be closer to home. They strongly suggested braces for her legs. Actually, they were pretty upset that the ortho guy didn't thoroughly look at her too. They saw right away that there was something wrong with her legs and kept telling me that she needs that to be looked in to and should have braces. So that is two PT's, two ST's, an OT, her pediatrician and her neurologist along with her GI doctor who agree that she should have braces. The ladies that came in today said that she is coping well with her gait, however, if she had braces, she would be much better and it would help to strengthen her hypotonia in her trunk and shoulder girdle. She would be better able to walk and have better balance.

    We are, unfortunately, still undiagnosed. Neuro told me today that the diagnosis for ataxic cerebral palsy isn't definitive. *sigh*. Neuro says that she is not going to give up, though and that we ARE going to find a diagnosis. she told me that if a doctor tells me that there is just no answer for her, to keep on searching because she will not except that for an answer. Whew! glad to know that somebody is on my side!!!

    -Sarah
  • Sarah, When we moved to FL we had tried a rehab doctor who didn't specialize in kids since there weren't any nearby and what a waste of money that was for us. He didn't even touch Nia's feet or legs. The child has been diagnosed with CP for two years now. We have been to enough doctor appts to know how they should go and the doc we saw was just a waste. If you feel the same I would definately get a second opinion. I know from all the evaluations Nia has had with therapist and doctors that they should be testing their range of motion and looking at their gait. As for the "W" sitting Nia is the same and we always tell her to fix her legs when we catch her sitting that way.
    Des
  • Re: Does Your Child Wear An AFO, SMO, or Other Braces?
    Hi Sarah,

    Lily had DAFOs for her clubbed feet. We used them to stretch her feet back to normal and keep her ankles from giving out. She got them when she was about 9 months (actual). She'd been splinted with homemade (at the doc's office) braces since birth.

    It took us somewhere between 2 and 4 weeks from the time her feet were cast (they used a rigid foamy type stuff) to the time we actually got the DAFOs. Our doctors office had the braces made elsewhere.

    Lily was out of the splints by 12 months (actual). By that point, her feet were pretty much corrected. The only bit of correcting left to do was being done naturally by her standing and walking. We still strech her feet regularly.

    If there is a hospital you like a lot, you might try asking them for a referral for a second opinion. We had one ortho tell us we needed to cast Lily's feet to correct them. We got a second opinion (maybe two months later) at the hospital where Lily was born and found out her feet were actually totally corrected. No need to cast.

    I have attached a picture of Lily so you can see what the DAFOs look like on a child. The AFOs look more or less the same.

    Oh, last thought. I saw you wrote that Quinn is sitting in a "W" position. She does that for balance. It can be hard on the knees and hips to sit like that consistently (and prevents developing good trunk control), which is why the doc told you to encourage her to sit Indian style. Next time you discuss Quinn's walking issues with a doctor, be sure to mention she's sitting in the W.

    Mary
  • Kena, thanks a lot for the pictures and thank you everyone for your responses. This helps to give me a better idea of what the PT and neuro are hoping to do with Quinn's unsteady gait.

    We went to our ortho appointment last week. I blogged about it. It was a P.I.A.! the ortho totally dismissed my concerns. Here's a copy of what I wrote in my blog:

    All I can say is, I'm getting a second opinion. I felt that it was a waist of time and totally blew off my entire day and I was so sad today. First, one of the young guys (dr.'s helper) came in and took a look at her. Quinn was throwing a fit, and wouldn't cooperate with anything. I told him to try and examine her in a few minutes, when she calmed down. But he said, nope, that's all he needed to do. Well, he didn't even DO anything! Ok, so then the doc comes in, sees her walk a very little bit, but Quinn wouldn't walk for him really, He said that her legs are flexible. He could bend them really well and asked if she sits with her feet out... you know, I can't explain it. Basically, she sits, but instead of putting her feet under her butt, she puts them outward, you know? Like a "W". Hard to explain, I'll take a picture one of these days. Anyways, just told me to encourage her to sit indian style, he didn't even examine her thouroughly at all. It was horrible!!!! I don't feel confident in him at all and will be seeking a second opinion. He asked me if I was a first time mother and I said yes. Then he nodded, then he said that kids who are learning how to walk are very wobbly and that she just needs time. But that she doesn't have a problem with her legs at all. He asked me if I had any other concerns other than her legs and walking and when I asked about the blue spells, he said that sometimes they can't find out why kids do that and unless it happens at the cardio's office, they will never find out and that it doesn't happen enough to be of concern. He said that I should still have cardio check her out, but he is doubtful they will find anything.

    Ok... he just made me feel stupid. DUH!!! I'm not going to take my kiddo to the doctor for nothing. Two physicians referred her to him and a P.T. I'm sure it wasn't because she "just needs time". He also told me that she has obvious other medical issues and that she will get better when we can address the other issues and that he will see her back in a year. It would be different if he thoroughly examined her, took all other opinions into consideration and watched her walk and THEN told me that braces for her legs wouldn't benefit her, but he totally dismissed any concerns I had at all. When we walked out of there, Quinn was a wobbly mess, she was falling all over the place, and she was tripping over her legs and everything and my sister says to me, did he not see this??? I said, nope, he didn't even think it was necessary. So, we are getting a second opinion!
  • AOF's a must
    They help hold the foot or leg in better line. I will say that they must wear them at least 6 hours a day... or you can get contractures and then they may need surgery later. AOF's work.

    Kristina
    Mom to faith former 25 weeker....
    vent dependant for 2 1/2 years at home.
    Now 11 years old... cp, g-tube.
  • Sarah,

    As you know Arianna has spastic cerebral palsy - diagnosed "officially" at age one - and we are on our second (soon to be third) set of DAFOs (Dynamic Ankle Foot Orthotic) which is basically the same thing as an AFO. She got her first set shortly after that diagnosis. As the ladies have already mentioned the amount of time to receive the braces all depends on if your doctor's office makes them onsite or sends them offsite.

    You asked about their purpose. As you know, one of the effects our children's diagnoses is the usual process of development is disrupted, and typical muscle strength & movement is compromised. Well, without regular, daily use of legs & feet the muscles don't develop properly and bones can become misaligned.

    The braces give the kids the needed support so they can learn to move and, if nothing else, prevents the joints from becoming deformed. As you also mentioned the braces to provide a stretch for those children who have too much tone and provides support for balance for all users.

    Here are some pics of a AFO & DAFO so you get an idea of what they look like.

    I hope this helps.

    -- Kena
  • Hello Sarah! My son also has spastic diplegia cerebral palsy. He was diagnosed at about 15 months, though it sometimes takes up to 2 years or so to get a diagnosis. He started wearing AFO's on both feet, and it has helped tremendously with balance and mobility. He's now 6 1/2 and is on his 4 set of braces. He will likely have to have them for life, but as long as works, it's so worth it.

    We can actually have the AFO's casted, made and fitted in the same day with our prosthetic lab, but some places it can take several days or a week... depending on if they have to send them out to be made elsewhere. There is often a fair amount of adjustments to make in the first couple of weeks after a new pair for my son, but the adjustments are always free.

    Good luck with everything!

    Page
  • Hi Sarah! Nia started really wearing her AFO when she was two. She has cerebral palsy (spastic diplegia). Her AFO forces her foot to stay flat and definately gives her better balance. She is supose to wear it about 6 hours a day (which is getting harder as she is getting older and more opinionated). We get a new AFO about every six months to a every year. I know insurance likes to stretch it out a year but that is difficult with foot growth. We usually get the AFO within 2-4 weeks from initial casting for it. You could get regular gym shoes for it, just in a bigger size. Sometimes it's a challange to find shoes wide enough. Another option is Hatchbacks which are made specificly for AFO wear. http://www.hatchbacksfootwear.com/products/girls.htm?-session=CartID:4C6EC8BD161ef0A368YsM24A5B77
    Good luck.
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