We call Caleigh's AFO's her Boots. She got a new pair this week.
I honestly hate the things. Caleigh can pull and wiggle her feet out of them in 5 seconds flat. The time it takes to put them on, stand up and start strapping her into her stander is exactly how long it takes for her to get out of them. So then we sit back down and repeat until we are fast enough to beat her to the standing position.
Don't even try to just wear them around the house either. If she isn't strapped in and bearing weight on them.....their coming off.
For some delusional reason I had high hopes for this pair. Not sure why, they are the same AFO just bigger.
Did I mention I hate them?
The orthotics lady says it's because of Caleigh's dystonia. The extension and relaxing of the muscles over and over wiggles her out. This is the main reason she can't have hinged AFO's too. They are afraid she will do damage to her heal.
So what to do? Try our hardest to at least get her in them long enough to bear weight in her stander. This was basically the only time she wore the old ones anyways. So we will definitely continue with that.
The other option I have been looking at is the Piedro Boot. This is normally a shoe worn by kiddos doing conductive education therapy. We have a hand-me-down pair of their sandals from our friends the Lieck Family. Caleigh's feet are still about 2 sizes too small for the loaners, but we have been using them. She is taking steps in her gait trainer wearing them and the steps look good. Caleigh won't even bend her legs in her AFO's. So I'm going to figure out how to order a smaller pair of the European footwear and get Caleigh the boot version.
Anyone have any other stability shoe suggestions? I'm open minded at this point!
We've got to figure out something that works for all day wear and right now AFO's are not that something. They serve their purpose, but for kids like Caleigh...conformity isn't always the best fit.
6 comments:
I wish I had some suggestions to offer. We have had the same struggle with Emily's AFO's. She is in her 4th or 5th pair now. The first 3 were fine. She could where then all day long whether she was standing, sitting or laying down. We tried to keep them on her as much as possible and she was fine with that. Ever since she got a new pair in January, it has been a battle. She has wiggled out of them completely. We had them adjusted about 8 times before the orthotist decided to start over with a new pair. And now we are on adjustment #3 or 4. She doesn't get her foot completely out now, but lifts her heel enough that it gets quite uncomfortable. I am about to give up on them completely because I am so frustrated! So I am anxious to hear/read what others have to say!
Hi there. We call our sons AFO's power boots! We had the same trouble with him getting out of the first boot before we even got the second one on. His newest pair has some adjustable padding at the achilles tendon. They are so much better and actually stay on through activities. I'd be happy to take a picture for you. Definitely going to check out the Piedro boots. Thank you for sharing.
Janet
I'm going to leave this comment anonymously, sorry.
My son is only a few weeks younger than Caleigh, and he has "dinosaur shoes" (in blue and white, not pink, thank you very much). His latest set is in two pieces: a little boot goes on the foot and velcros (that's not a word, is it?) in place with the tongue inserts, and then the boot locks into place inside a long L-shaped shell with straps on the shin and ankle, just like the ones in your photo.
The two-piece setup has worked a LOT better than his previous one-piece versions - much easier to get on his feet without tears, and he doesn't wiggle out as easily. You might want to ask your orthotics person to look into these...
Just by looking at the picture (hard to say) but it seems like these boots would allow one to slip out easily. The coverage on the top of the foot by the brace itself seems fairly minimal... We have way better luck with the strap going under the brace rather than over the top if it. I would suggest having a different ortho make suggestions for keeping her foot in. Regardless of tone, if the boot is 'right', it should serve it's purpose.
We actually just switched ortho places to get a better brace for Oia. She slips up minimally in her current pair but she will still get and SMO insert that will fit inside the brace to hold the heal down. Mention an SMO insert and see what they tell you...
But hang in there, adjusting these things does get frustrating and quite quickly too!
If it's any help, Smiley has been wearing Piedro Boots for years and I find them great.
I've read somewhere that dystonic kids often need spiral AFOs? I've never seen them, but maybe if you Google it?
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