Yesterday our PT (this was her first time seeing Elliott) suggested that because he sleeps in the fetal position, we should put knee braces on him to keep his knees straight. So she gave us some braces, essentially what you get when you blow your knee out and they don't want you bending it. Elliott is great with his night heel braces, 'boots' as we call them, but he wanted no part of these knee braces. I'm wondering if anyone else uses these, or has had them recommended. I don't recall reading about anyone using them in the message board, so I'm curious. I'm wondering if these are really necessary...

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I'm curious to see what answers you get too Paul. I've not heard of these being used! Is this a PT that CHOP recommended?
YEs - actually it is a PT at the CHoP Specialty Center. We set up to see her every 3 months for follow-ups. Elliott gets regulary (weekly) PT right now through the Intermediate Unit.
I'll ask Heather if she ever heard of this as well.
I havent heard of it, but i would be interested to see if anyone had used them and they helped. My son is 12 and full time in a power chair and he has contractures ehind his knees. It makes for a difficult time finding a comfortable sleeping position.
I'm wondering if these could help with not just keeping the knees straight, but help prevent the bent knees from turning outwards also, sort of in an "Indian-style" sort of way. This is definitely an issue with Tyler and will find in nearly impossible to stop him from moving back into this sitting position as it seems most comfortable for him. Even with his braces on at night, he can still spread his knees out to the sides.
Hi! I am new to the site. I have read about night braces. I was wondering if it would be a good thing for my ten year old. Do the boys have calf cramps in the morning after wearing them all night? Do they have calf cramps during the night? Have you seen a difference since starting to wear them? I would like any information you could share about the braces. Thank you very much.
God is faithful.
I just had my 5 year old son fitted today for night braces, DAFO's. I asked the guy about bracing knees and he said absolutely not. He has been in this field for over 30 years, has practiced in many locations around the country, UCLA and many others and said to not do knees. I guess of course, every child has a different situation. He said that every single child with DMD should wear night braces. He said massage the legs, use a hot tub, do your stretches, etc. every night, then put the braces on and the benefits are found to be great, compared with not doing it. He has seen too much evidence over the years showing the benefits and said he was sad that many doctors don't recommend it. Thanks,
Our 9 y/o Charlie is on his 3rd set of AFOs. These are a bit longer than the others, coming up to the top of the calf but still not incorporating any of the knee. Most times he let's us put them on at night, when he doesn't we wait until he falls asleep. He never has worn braces during the day but the night braces, in my opinion, help a great deal. His 7 y/o sister wants his old "sleepy shoes".
Thank you for the good information. Tyson has his next Dr. appointment soon so I will be having him fit for them. We try to do the stretches and light massage every night before bed. Tyson's doctor told us not to let him use a hot tub though.She said that the heat would cause his muscles to lose creatine and break down as if he did strenuous exercise. Like you said Michelle, every child is different and she may have been talking about Tyson's legs.
Thank you!
Hi everyone! I am a HUGE fan of those braces. My oldest son used to wear night braces until they recommended him to use day braces instead. However, he was fitted with those night braces a little too late in my opinion. We should have used them earlier. He began having problems sleeping because they were so uncomfortable. They put him in day braces instead. Once he started using them in the day time, he had even more problems walking and then had to be put in a wheelchair to function at school because he was very unstable walking with them. At that point it was pretty much up to us how we wanted to handle it. Because Avery was so uncomfortable with wearing night braces, we decided to do away with them completely. Eventually, though, he slowly began curling into a fetal position and eventually developed contractures to where now that's the only way he can sleep now. Now that he's in the fetal position at night he has extreme difficulty getting comfortable, needs help turning, and has to be monitored even more closely for pressure sores because he's knees are constantly touching at night. We should have stuck with the leg braces..sure they will eventually stop walking and get contractures but the longer they can walk and be without contactures the better. Matthew, however, has been using day braces for about two years and he's doing fantastic! With stretching and braces, I think the earlier..the better. Hopes this helps out!
We/ve decided at this point not to have him wear them-- partly because they seem so cumbersome and he instantly wanted them off - and also because with it now summer they are very bulky and would be very hot. We'll retry in the fall when at least one of the annoyances of them will be out of the picture
You know, I forgot to mention this but there are different braces for day and night. I know we started out with the bulky ones and upgraded to some really light braces with like plastic instead of the huge ugly bulky things. But I understand..sometimes what our boys really need is just comfort.

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