Brace struggles suggestions?

[DeniseC]

I have tried to read most of the threads on here before posting and we have tried things I have found on here. My daughter is almost 12 and has been wearing her brace for a little over 2 months. We have been trying to work her into more time and we are making her sleep in it. She is still not wearing it to school yet. It is the hard shell brace that I think is called a TLSO brace. She is fighting wearing the brace and that is getting worst instead of better. She complains about it hurting her. She also has trouble sitting in it or going to the bathroom with it on.

It is a real battle to make her wear it. She does not want any one to know and it is almost impossible to talk to her about it. A couple of her friends know and they have been really supportive, but she won't even talk to them about it. She thinks the brace makes her a loser and a freak, which we all know is not true.

We have gone to numerous fittings and at one point there was a concern that the brace was made incorrectly, so for about a week she did not wear it. The xrays showed that the brace is working (a 41 without the brace to a 13 with the brace on). Since then she has fought the brace even harder. Nights are the hardest. None of us are getting very much sleep.

I have tried to get her to read the forum here, but she won't yet. I kept hoping she would eventually start reading it some.

Any suggestions? We have tried everything we can think of.
Thanks,
Denise

[Ballet Mom]

Hi Denise,

Your daughter's brace is achieving a great correction! That's good news. It seems odd that your daughter has a hard time sitting in it. That is not good because a brace that is too uncomfortable won't be worn and won't work if it isn't used consistently. I would definitely keep working with the orthotist to make sure the brace is wearable for your daughter. Maybe the length is too long and could be shaved down on the bottom edges....or maybe the orthotist has simply marked the straps at too tight a spot in order to achieve an excellent correction. Perhaps the orthotist and orthopedist could relax the tightness a little in order to make it a little more comfortable and still achieve an appropriate correction.

Who is concerned the brace is made incorrectly? If the doctor/orthotist think that, maybe a replacement brace is in order...although if that is true, I'd go to a different orthotist. Make sure her orthopedist knows she is having trouble with the brace. I would think they'd have you bring it in to see what's going on with it.

[Ballet Mom]

Oh, just a thought. Since your daughter is having an increasingly difficult time with wearing the brace, it is quite possible that she has continued to progress since her last x-ray since she hasn't been wearing the brace enough hours in the day to hold a curve. I would definitely contact her orthopedist...when is her next x-ray scheduled for?

[TAMZTOM]

The xrays showed that the brace is working (a 41 without the brace to a 13 with the brace on).

Fantastic correction. However, IMO (parent of a scolio kid, non-medical) you need to ensure that the correction is not being achieved at the expense of damage elsewhere (e.g., rib distortion, sternum compression or compensatory curve exacerbation). My own daughter never complains without a genuine, insightful reason.

[Pooka1]

Kids can progress even when wearing the brace as directed. My daughter continued to progress in the year she wore her brace as directed. If there is progression, you will never know if it was due to the curve being brace-resistant or due to non-compliance and it is VITAL you never blame your daughter for any progression due to lack of compliance.

Bracing is still in the research stage (e.g., BrAIST study) and is NOT proven in AIS. The jury is out on other cases like Chiari/syrinx because it hasn't been studied enough as far as I know so there is hope there. There is evidence bracing WILL NOT WORK in certain scoliosis situations including Marfans Syndrome.

Please ask your surgeon about the evidence case for bracing AIS. Top (and in fact all) surgeons will admit there is no good evidence bracing works in AIS though they hope some day they will figure out how to make it more effective.

If you cannot gain compliance with your daughter and she has AIS and her curve progresses, you can never blame non-compliance. There is no evidence to cite.

[Ballet Mom]

My comment about possible progression was certainly not in order to blame Denise's daughter for brace non-compliance. A brace that is too tight and uncomfortable to wear is a poorly constructed brace and if the curve is progressing, it's going to make it that much more uncomfortable. You would certainly hope parents wouldn't blame their kids if their curves progressed, no matter the cause.

In addition, the reason they put sensors in the brace studies is because the answers of kids reporting whether they were compliant or not are often incorrect and unreliable.

[LindaRacine]

I once heard Robert Winter, who was a great brace proponent, talk about bracing kids. He said that the one time he would not push a kid about wearing a brace, is when it has the potential to have an adverse effect on the parent/child relationship. While it's certainly better to not have scoliosis surgery than to have it, it definitely is not the end of the world.

[Pooka1]

Beyond the parent/child bond, there are serious ethical questions raised when suggesting such a difficult treatment in the face of little evidence of efficacy.

I am convinced parents are not properly appraised of the evidence case for bracing in general. If they were, I think there would be less cases of parents scaring the crap out of children about surgery in order to gain compliance with wearing a brace. And when those kids need surgery, they are already around the bend with fear because of it. I don't judge parents for doing so if they are operating under the false assumption that bracing is a proven treatment and not still a research area. But once apprised it would be morally remiss to force compliance in any way.

ETA: I also don't judge parents for being around the bend scared about surgery for their children. That is normal. But perspective always. I was much calmer for the second kid compared to the first because I had evidence of a quick recovery, a stellar result, and an experienced surgeon telling me that was likely the only back surgery for the first kid. As you say, it is not the end of the world by a long shot. My kids say they don't think about scoliosis any more. Priceless.

[jrnyc]

a suggestion just from someone with a lotta years
working with kids...and the last years with them as a licensed social worker...

does your daughter see anyone she can talk to who is completely objective...?
that is, a counselor, therapist, social worker, etc....
someone she can say anything to, express her feelings,
maybe some anger in there at why her, why now, why this, etc....
it might help, doubt it could hurt...

best of luck...
jess

[mamandcrm]

Hi Denise,

12-13 is a tough age to start the brace. Kids are so much more self-conscious at that age. Emotional issues aside, however, I am wondering about your comment that the night-time is the hardest time. No one is seeing her then, so is that an issue of discomfort or defiance, or a bit of both? If mostly the former, then my suggestions are four: (1) get her a memory foam mattress topper--3-4 inches in depth; (2) try to identify the painful/irritated areas, then talk specifically with your orthotist about them; (3) send her to bed with the brace looser, and try tightening it a bit as she sleeps if you can, or just let her get used to it for a bit and tighten a fraction every couple days; (4) Tylenol PM for a couple weeks to see if that helps ease the discomfort and send her to sleep. With her mentally resisting, maybe these won't get you far, but perhaps she will see that you are trying to meet her half-way and will give it a chance. Good luck to you.

[jrnyc]

emotional issues aside...?
i would NEVER say that about any scoli kid, let alone a teen who has to wear a brace!
if it weren't for the emotional issues, i would expect better cooperation, and the physical
issues of adjusting the brace would be the only "resistance" there was...
the physical aspects of the brace...any irritation, discomfort, can be addressed
a heck of a lot more easily than what is happening inside the child's mind and
soul...
anytime a parent says it is "impossible to talk to her about it" i expect the emotional issues cannot
be put aside!

jess

[Pooka1]

Jess good point though I doubt mamandcrm was trying to minimize emotional issue rather than draw the discussion for the moment to the physical issue of wearing the brace at night.

And on that issue of physical discomfort, there are plenty of cavalier comments to the effect that a correctly fitted brace can BY DEFINITION be tolerated. Just get it tweaked correctly by the top orthotist and BINGO!... tolerable physically. Well I am no expert but I want to suggest that the best fitted braces in terms of highest hope of efficacy are likely the least comfortable because they achieve the best in-brace correction. It strains credulity to suggest better in-brace corrections are MORE comfortable. Call me crazy, ignorant, etc. etc.

[jrnyc]

well, it is pretty hard to communicate at all with a kid with whom it is
"impossible to talk with"
any brace is going to be trouble in that situation,
and do braces not feel somewhat uncomfortable if they are to do their
jobs, kinda like getting braces on teeth adjusted every so often?
can a brace jsut plain not hurt or be noticed by the wearer and still
be achieving some change for the patient?

jess

[mamandcrm]

Oh please, of course I didn't mean ignore the emotional issues--I would appreciate it if you would refrain from jumping all over people who are trying to help. I simply was trying to address the physical side of things which might help ease her into wearing it at night as a first step. I do have a kid who wears a brace, you know.

[Pooka1]

I do have a kid who wears a brace, you know.

Yes and just to avoid all possible confusion for the original poster, your child has Juvenile IS (JIS), NOT AIS as it appears her child has just from the age posted. The bracing success situation appears to be different for those two conditions.

I think it would be helpful if JIS parents posting advice to new AIS parents about bracing always clearly point out these different cases.