My son won't wear his scoliosis brace!

[Faithr]

It's been two weeks and my 14 yo still will not stay in his brace for more than 2 hours a night. He's supposed to be wearing it for 8 hours. I feel like I'm torturing him. I've taken to waking him up in the middle of the night and making him put it back on but I don't know how long he actually wears it. I keep telling him he really, really needs to do this to try to avoid back surgery. If his scoliosis gets worse that is what is in store for him. He looks crooked. One shoulder is higher than the other and one shoulder blade has rotated out so that he looks like he's getting the beginning of a humped back. The doctor says that because he's growing this will get worse and needs to be corrected now.

 

Any suggestions?

 

Thanks.

[Amber in AUS]

Does he have to wear it at night, can he wear it during the day? My 2 friends in high school that wore braces wore them almost full time. One ended up with surgery anyway. I would just make it a not negotiable item and discipline accordingly. My DD hates wearing her eye patch, but it is not negotiable.

[Pajama Mama]

My cousin had to wear one about 15 yrs ago so I'm sure that things have changed since then. If she didn't wear the brace she would have been in a full body cast for over a year--or the surgery. I'm sure you're son would prefer the brace over a full body cast. I had a cast over one leg for a few months and it was horrible. I cannot even fathom a full body cast.

 

Does the doc have any recommendations? Maybe he can give you the name of a former patient that wouldn't mind speaking to your son. Maybe someone who has been through this can give him pointers on how to be more comfortable. Bless his heart. That must be so frustrating for him--and you.

[Tammyla]

Like Amber, I wonder if he could wear it during the day.

 

Another option is to go to bed early and read with on for as long as possible. Also look and ask if there are irritations or anything you can try to fix.

 

Poor kid.:grouphug:

[Katrina J]

It was over 20 years ago now, but I had a friend at boarding school who was meant to wear a brace and she absolutely hated it. I remember tears, avoidance and stories of her trying to hide that horrible big fibreglass thing. It must have been hard because otherwise, she was the most well-behaved, obedient girl in our year group. She became very thin and frail from the stress of it all. At least your son is home with you for support.

 

Could you try working up to 8 hours gradually and let him choose a reward or a series of rewards as he reaches his goals? I wouldn't have a problem offering a much-wanted item in this situation.

 

:grouphug: It is tough, I hope you find a way to make it work.

[AngieW in Texas]

Is it a Charleston or Providence brace? I know those are worn only at night. My oldest was in the Boston brace, but she was supposed to wear it for 22 hours/day. Fortunately, she only had to wear for it one year before her growth plates closed and she was done. She wore it from 14yo-15yo.

 

While my dd didn't like wearing the brace, she was desperate to get all the height she could, so I didn't have any compliance issues with her. Aside from exercise, she had the brace off for only about 1 hour/day. She did spend 1-2 hours nearly every day exercising either at the gym, at the pool, or in Tae Kwon Do class. The doctor told us that time spent exercising didn't count as out-of-brace time.

 

Have you tried joining scoliosis forums? There are several. Just do a google search.

[Jann in TX]

I had a few sleepless weeks after my back surgery this past summer--the brace made sleeping (or trying to get to sleep) miserable!

 

The newer scoliosis surgery DOES NOT REQUIRE A BODY CAST. They insert a rod--the recovery time is a few short weeks (minor pain meds if any)--and the patient is walking around the same day.... I had major back surgery this summer and they had me up less than 3 hours after surgery... I had to wear the brace 24-7 for almost 5 months (my ligaments were 'too loose')--but most patients with similar surgery dont have to wear one at all!

 

The brace will not help if he does not wear it---so if he takes if off at night--he gets to wear it in the daytime... also if his curve is as bad as you described make sure that the brace will actually help...so you have realistic expectations.

[Debbie in IL]

Angie, I could ditto everything you said. Dd is in a Boston brace right now - and while it is rough, we are hoping she is out of it VERY SOON. To hear that your daughter was successful is so encouraging!

 

Faith, Dd has the same issues as your son - crooked shoulders and a shoulder blade that pops out. But - the brace is WORKING! I think that the best thing that someone said is that the brace won't work if it isn't worn. How long has your ds had the brace? Dd (14 1/2) has had hers for almost 11 mos. She is actually in her second brace, as she grew out of the first one. She was just telling my mom that she actually prefers to wear it at night since she is sleeping and she can't really feel it then! I think the key is getting used to it. The more your son wears it, the more "comfortable" - and I know that is a relative term! - it will be.

 

We, too, are trying to avoid surgery. I know the surgery is better now that it used to be - but it is still something that we do not want dd to go through.

 

Dd has to wear hers 23 hours a day. Like Angie says, her exercise time doesn't count as brace time - nor does swim time in the summer. Dd's ortho told her that daily exercise can help so much in making the brace-wearing more comfortable.

 

I hope this helps - feel free to pm me if you have any other questions.

[Debbie in IL]

Just mentioned this to dd - she reminded me that one of the biggest things that has helped her sleep is using a body pillow - one of those long pillows that stretch the length of the bed.

[LG Gone Wild]

Your ds is lucky. I had to wear one 24/7. Anyway, it must be done. I know that it sucks but I would start punishing for not wearing it. A lot of time, energy, and money went into that brace! He can't just not wear it.

 

Wearing it at night is so much better than having to wear it during the day! He could try it out during the day and find out the simple tasks such as peeing become challenging. Perhaps you could speed up the adjustment by giving him a sleep aid until he gets used to wearing it at night. I also recommend a lot of back stretching and strengthening exercises. He might feel a bit stiff and sore in the mornings.

 

Being crooked is worse and way more uncomfortable than wearing a brace a night.

Edited December 23, 2009 by LG Gone Wild

[hornblower]

Would you consider using some sleeping pills to help him settle into sleep in the brace? If it's uncomfortable he may be having problems falling asleep.

 

Have you shown him photos of what untreated scoliosis looks like?

My maternal aunt has it badly and it was untreated. Her dd needed the surgery 30 years ago. Everyone in our family is on the lookout for it because of the genetics in our family.....

[angela in ohio]

He is too immature to know what is best, and I think he needs you to be tough on him. I agree that: (1.) if he doesn't keep it on at night, you could make him wear it during the day (even if it requires him being in bed,) and (2.) sleeping pills might help. This is a medical decision, and at 14, he needs you to make it for him. I wouldn't worry about torturing him.

[Laurie4b]

I would call the doctor and ask for his suggestions. He knows what the options are. He knows whether the brace can be worn during the day, whether other patients have taken sleeping pills for a while, whether there are pads or something that could help the discomfort.

 

At the same time that you're working with the doctor to do everything you can to eliminate the discomfort, I would also, as other posters said, make this nonnegotiable. In every kid's life, there are some things that they just don't want to miss, give up, etc. You may need to get tough. But first, I'd call the doctor for solutions.

[kewb]

You could do what my parents did to me. Showed me a girl in our congregation who was in a wheelchair waiting for her surgery to have a steel rod fused to her spine because she wouldn't wear her brace. I did what I was supposed to do and I had to wear that thing 23 hours a day.

[katilac]

I wouldn't object to giving a teen-ager something to help him sleep, but just for a night or two.

 

If he's waking up and taking it off, or not getting to sleep and then finally just taking it off, I'd probably plan to stay in his room with him (or require him to stay in mine) until he has a successful night keeping it on. I'm guessing he will quickly prefer privacy and the brace.

 

I'm sure it's uncomfortable, and I'd do stuff to make it easier (body pillow, sleeping aid for one or two nights, reward at the end of a week, then a month), but when push comes to shove he just has to do it. Tell him to man up, ;).

[Faithr]

Thanks all! He is miserable right now because he just can't fall asleep with the thing on! The dr said give it two weeks to get adjusted. He's been trying to deprive himself of sleep hoping that that will help him. So now he'd down to 4 hours of sleep at night and still can't get to sleep with the thing on. Tuesday was 2 weeks. I was thinking of both giving him something to help him sleep and also sleeping in the same room to make sure he kept it on all night. So those suggestions are good! I think I"ll try them tonight.

 

This type of brace is only for at night. You can't move in it! And he is lucky that he doesn't have to wear something all day and night. There is always someone worse off, isn't there? God bless those kids who have to endure that!

 

The body pillow is also a great idea. One of the problems is he has to sleep on his back and he was a curl-up-in-a-ball-on-his-side kind of sleeper. So being able to snuggle next to a body pillow might really help.

 

Thanks everyone for your suggestions. I really appreciate it. And I'd forgotten that the dr had recommended the scoliosis forum so I'll check into that as well.

[kpupg]

Any suggestions?

 

 

First off .... :grouphug:

 

 

I am so sorry your son is having such a hard time with this. I know it is no easier on you, just in a different way.

 

My dd12 has her Boston brace 2 weeks exactly today. She is up to 18 hours.

 

The first few days were h***ish. Because they told her to start with sleeping in it and it is HARD to adjust to sleeping in it. There is pressure on weird places on the body, and just the hardness of the thing made it really HARD to adjust to it. She missed quite a lot of sleep that first week, but she did eventually adjust. She seems to be sleeping fine now.

 

It is just HARD in every way.

 

Fwiw, for my dd, it is not optional. Both her dad and I are actively monitoring the situation. Also, dd has an advantage -- though I would never have thought of it as an advantage before now -- she had open-heart surgery at age 7 and the last thing in the world she wants is another major surgery, so she is motivated by that in a very real BTDT kind of way.

 

As for suggestions ... I wonder whether your son really understands what the spinal surgery would entail? Maybe a little "scare" session with photos and whatnot would firm his willpower? Maybe not ...

 

:grouphug:

 

Karen