This has been a burning question for me the last couple of days. My 4 yo daughter has just received her first AFO for her right foot... she has spastic right side hemiparesis.
Four weeks ago when we visited Shriners, the dr put a cast on her right leg and said it was preparing her for the AFO when it comes in. Since they took the cast off Monday her walking has really changed... it appears more like she is dragging her right foot.
I didnt ask the Shriner dr about her strange walking that day because I assumed it was due to just having the cast removed. Before the cast her walking was more of a slight wobble and you really couldnt tell that she had any disability. Now it is definitly noticable that she has a leg problem.
She has been complaining about the brace being uncomfortable but she likes to wear it (she likes the attention). There arent any pressure marks on her foot/ankle other than the ankle strap since it has to be snug. And we havent found a good shoe for it either.
So I wonder is it really useful for her condition since she has mild cp. Will she always have to wear one the rest of her life or does this help her walk as she grows?
I plan on asking her ot and pt about this but I figured I'd try to get some input from folks who've been there and done that.
How long did she have a cast? It's possible her muscles could just be weak form disuse
As far as the AFOs, I had them constantly when I was young but don't wear them anymore. I don't really remember why I stopped, and I think it'll just depend on your daughter's case if she contiues to wear it.
They are uncomfortable, but if you don't see marks I wouldn't worry about it. She may just not be used to it, or maybe her leg gets hot
I had the hardest time getting used to AFOs when i was younger and still have a tough time getting used to new ones. They do help me greatly and they make me much more stable when walking. My advice would be to give her time to get used to them and if it doesn't improve talk to her doctor.
I am 24, and I wear bilateral AFO's. I got my first pair a year ago, so it was very hard to get used to wearing them after so many years of walking unaided. I am right hemiplegic too. I don't know why the cast would have changed her walking, but I guess everyone is different. You might want to ask the doc at Shriners if it keeps up. I know when I put my first pair of AFO's on, I fell over, but that was because they were solid ankle ones. They made another pair with hinges, and that helped, because I have functional movement (for walking) at the ankle. It takes awhile to get used to AFOs, because it holds the feet(foot in this case) in a position that she is probably not used to having her foot in. They are comfortable after awhile, don't even know I have them on most the time now. As for shoes, there are websites for shoes designed specially for AFOs. Do a search on "shoes for AFO's" and you should be able to find a decent shoe. If you don't want to spend that kind of money (they're expensive) you can just get a normal shoe in wide width, or with a removable insole to add width to the shoe. Hope I have helped.
My daughter , now 21 months old, is actually going today to get her 2nd pair fitted again, she outgrew the first pair in like 4 months. She never had a cast beforehand though. She does complain with them when she wears them, and they do leave red marks, but her PT says thats bc they are too small now, and that they shouldnt leave any marks, red marks can be a sign of unproper fit.....They help hannah alot, they have straightened her little feet in a matter of months, when before they always pointed in a downward position. But no matter how much they help, she still hates them and tries her hardest to remove them. Hope all goes well for you, but i feel that do work.
My daughter had the cast on for about 4 weeks and they removed it Monday. And her walking with and without the cast is heartbreaking for me to watch because she complains about her ankle hurting and tries not to put any pressure on it while she walks. She still walks like she did the day they removed the cast... her foot turned outward and almost dragging it. She can't even run anymore. Is this supposed to be a normal part of adapting to an AFO?
I'm having a hard time understanding why this cast/AFO business is making her walk strange. I know its only been a few days since she got the AFO but I dont understand why its hurting her when the cast she wore for a month was positioned in the same way. She never had any problems with the cast other than a couple of toe blisters.
It just seems like its making the situation worse. Before, her walking wasnt all that bad so why fix it when it isn't broke.
I will keep her using her AFO... but I will be talking to her pt, ot, and Shriner dr next week to see what's up with this.
Her ankle is probably very weak from being in the casts for four weeks. I has long-leg casts on for 3 weeks and when they took the cast off I had lost most of my muscle mass. In addition to that I had my lower legs casted for nine weeks and when I came out of those casts my ankles could not support me, they were that weak. It might take a while for her strength to return. Honestly though, I don't understand why they had her in a cast for no reason. It seems to have caused more harm than good.
I've been wondering if she really needs the AFO. I know her right leg is spastic but will it get any worse if she doesnt wear an AFO? I've been trying to contact her pt and the shriner dr but all I've gotten is recordings.
I wonder if this is reversible... you know if she stops wearing the AFO altogether, will she go back to walking the way she did before? If it is reversible I'd rather her not wear an AFO.
Honestly, I have doubts about that dr. Sometimes I feel that dr's may do things as sort of a "protocol" instead of thinking about personel situations. Those Shriners drs see lots of patients and I wonder if they get caught up in routine procedures and forget to think about what's best the individual kid.
I've been in AFOs on and off for a long time. When I was around 3-5, I was in the big metal AFOs . And I eventually had 3 different operations when I was that age too. It takes a long time to regain strength. Even recently I had another Achilles lengthening. I've been in an AFO for 6 months, and i walk all over my university's campus, and i still walk a little funny because of the weakness. Some of this is because of the AFO, since it gives some support. But While I'm healing up, doing PT, it makes sure that I'm walking correctly and makes sure that i have some protection.
I'm a college student and walk up to 45 minutes a day, and i still dont have all the strength that I had before, but its a lot better than when I was just out of the cast. At this point my doctor ordered me a DAFO to wear for 3 more months. This is just to go down a step in support and to give me some protection as well. Since tearing the achilles would be the worst thing that I could do. It takes a while to regain your strength.
Also, is your doctor planning on doing another surgery in a few years?
I don't understand why your daughter was put in cast. I've never heard of someone being put in a cast before getting AFOs (other then the cast they remove imediately for the fitting) UNLESS they do botox. The cast sounds like the problem to me NOT the AFOs.
I've never had a problem with my AFOs unless I had out grown them.
THEY SHOULD NOT LEAVE ANY KIND OF MARK—EVEN IF THEY ARE SNUG.
I always thought my AFOs were a great help to me, and didn't like not wearing them. I hope the doctors and therapists figure out the problem soon. Good luck!
I've never heard of a cast being left on long term, unless there was some surgical procedure, or something other than just AFOs. The cast for the AFOs is just to get a mold to make the braces, then it is removed and used for that purpose. Rednesss that last more than 30 minutes should be looked into and corrected. Sometimes wearing a pair of braces takes some adjustments and fine tuning, until they are comfortable and fit good. Good luck!
Hey Everyone, I am glad i found this site. I have 14 year old with mild cp. She has had AFOS since she was two. I beleive they help her but they cause so much trouble. She was very edemenus(sp) which means she had much water retention when she was born. I beleive this has caused her to have sensitive skin. They afos rub her raw every other week. So she takes them off to let her heal. It drives us crazy and her pt crazy. She can not wear them for long. Any suggestions would help.....We have tried all kinds of socks...
My daughter never had to wear cast before AFOs. She was only casted for the mold to be made. they put the cast on and then took it off.
Malwm01, you are totally right... the cast was the problem. It caused her ankle and arch regions pain because of 4 weeks of nonuse. But she is doing fine now... she can run and do everything just like before, even with the AFO. I am soooooo relieved.
I finally talked to her pt about it and assured me that the AFO was okay. Actually she said that she had been wanting to see my daughter in one before now. I trust her more than anyone because she has been working with my daughter from the beginning. She explained it all to me... she knew I was very frustrated. The AFO for the most part is for proper muscle alignment during growth. She expects my daughter not to need one anymore when reaches the teen years... that is if she wears the AFO daily from now on.
The cast she wore for 4 weeks wasn't the same cast they made for the AFO mold. They made the mold first, then they put the cast on her to "prepare" her foot for the AFO which took about one month to arrive. That's what Shriners told me... I'm not sure why they would do it for some and not others.
One Shriner doc (she never sees the same doc twice!) said she would probably need heel cord and hamstring surgeries around age ten... which is another issue because some have told me not to let them do that. We'll just have to wait and see.
My 4 year old son has been wearing afo's for about 21/2 years, on his 3rd pair, and they are great for him. They help to strretch his muscles and he has been able to stand now. As for shoes, we have just bought inexpensive ones from payless shoe source, famous footware, etc.. we just have to get a wide width. Summer though is a great time to get velcro sandles that slip on easy and tighten easy. Hope this helps.