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Teen & back brace

My son is 14 & has a dx of PDD-NOS & moderate to severe sxs of ADHD. He also has autonomic dysfunction & an unspecified muscle myopathy that contributes to his hypotonia & easy fatigue. That's the brief hx - now to my problem & question.

He also has congenital kyphosis & has been prescribed a back brace to partially correct the curve &, hopefully, prevent further curving...BUT...he hates wearing the brace & will "forget" to go to the nurse's office to put it on at schl and fights me tooth & nail at home about wearing it. He does get very hot while it is on & since he can't control his body temp., we often end up taking it off, but then we can't get it back on him.

How do I convince him he NEEDS to be wearing his back brace more than he is? We've only gotten him up to 4 hrs/day in it (1 @ schl & 3 @ hm) & he needs to be in it closer to 10 hrs/day. The schl nurse wants him to be more responsible about...cont. below

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Asked by Anonymous at 11:17 AM on Dec. 21, 2009 in Kids' Health

Answers (8)
  • going to the nurse's office to get the brace on, but he forgets if someone doesn't remind him. She feels he's "old enough" (he functions at a 9 y/o level) and "bright enough" (intelligence does not equal capability) to do it on his own, but I know he isn't ( I swear, if it wasn't attached, he'd forget his head every morning). So, now I've got the schl nurse riding me about him not wearing the brace enough, but nobody wants to help him to remember to wear it or work with him on it - It's all up to me and I'm not at school with him! Besides, I can barely get him to wear it here at home. He's bigger than me and stubborn as all get out and he honestly doesn't have that much time between arriving home from schl & going to bed (about 5 hrs), so when is he supposed to get stuff done if he's in the brace all the time? And if we have therapy, he isn't supposed to wear it or if we're in the car or when he's on the bus, etc.....Aaaaahhh!

    Answer by Anonymous at 11:21 AM on Dec. 21, 2009

  • Hi, I assume your son is being seen by an orthotist? My DH is one, and perhaps he and his orthotist need to have a conversation....he is embarassed to wear it, and that is okay but you and I both know he has to do it! My DH sees lots of teenage boys, and I promise his care provider wouldn't hesitate to have a talk with him, sometimes DH will show pictures of what can happen if the condition his patients are being treated for do not get treatment. If this is just a brace provided for by his regular doctor, perhaps they could come up with something "cooler" to wear, they can be made in all kinds of colors and stuff. Have the nurse page him to come to the office, but honestly call his orthotist and schedule a talk,,,,,I am sure he/she will be happy to do it, good luck mom and god bless you!

    Answer by kimigogo at 11:25 AM on Dec. 21, 2009

  • PS--just read the rest of your post, and GUESS what? The nurse's job is to make sure your kid has his brace too bad it irritates her that SHE as an ADULT has to make sure he gets it on...UGGGG this is what makes me mad about health care...a SCHOOL nurse's job is to take care of the STUDENTS in HER school! PM if I can help anymore, I will be happy to talk to my hubby about any other ideas!

    Answer by kimigogo at 11:29 AM on Dec. 21, 2009

  • Thanks for the reply kimigogo....No, the brace was prescribed by the orthopedic doc. While I trust our orthopod completely when it comes to medical stuff, he's totally clueless about how to talk to an autistic teen and has messed up those conversations badly because he says too much & just loses him. The biggest issue, I know, is the autism, but I just don't know how to impress upon him what could happen. Does your DH know of any websites where I can download pics? Maybe having a visual reminder would help.

    Answer by Anonymous at 12:14 PM on Dec. 21, 2009

  • Hi I talked to DH last night and he said that in some cases---he hasn't seen your son, so he can't know for sure, they make braces for this condition to be worn only at night! He suggested that you talk to your doctor and explore that avenue,,,,,I would google the condition and see if there are any pictures, depending on the severity, he thinks you might need a night time brace, but only his doc will know for sure---he did ask has he had any surgeries or anything, hope it works out for you!

    Answer by kimigogo at 10:38 AM on Dec. 22, 2009

  • 14 year olds are pretty sensitive to looking and being different in appearance from their peers. Being different can sometimes create teasing situations by the other kids. In addition, peer pressure can create problems. He is probably aware he is different in how he acts and feels from his normal problems. I would liken the situation to being on crutches because of a hurt back. It is there to help him look and feel better.

    Answer by Anonymous at 5:29 PM on Dec. 28, 2009

  • kimigogo....Thanks for the additional reply! I'm sorry I didn't reply sooner, but I got busy and forgot about my post....shame on me. Anyway, if you do see this reply, I did ask about a night brace and the orthopod said no. He wants my son in it when he is up and about during the day b/c some of my son's curve is postural and he wants my son to learn to straighten up while he is up and about during the day in the hopes that he will build some endurance & maybe a teeny bit of muscle to support himself. To answer your DH's questions about surgeries, no, not yet. If the kyphosis doesn't show any improvement by April, though, then that will be next on the table. As it is, the curve had increased almost 10 degrees from August to November (but that was w/o the brace on full time), so we shall see. We have gotten him up to wearing the brace at school most of the day now & can get him into it for 4-6 hrs/day at home after school. Thx!

    Answer by Anonymous at 2:50 PM on Jan. 29, 2010

  • Anon :29 - If he were a typical 14 y/o I would agree, but since he isn't, not so much. His appearance isn't important to him at all, but his comfort is and that is the issue we're having w/the brace - comfort. He's getting better about it now, though, and thank you for your input.

    Answer by Anonymous at 2:51 PM on Jan. 29, 2010

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