New to bracing, and it's not going well :(

[BaltoMom]

Hi all,

Just thought I would update you all on my daughter's progress. She is currently on the wait list for VBS surgery at Shriner's, so she still must ramp up to the 23-hour/day brace wearing requirement. We had some terrible nights, lots of tears just trying to get her to complete an hour or two. I think some of her intolerance was just emotions, fatigue, and some hyper-sensitivity to the tightness sensation, but with Tylenol 45 minutes before she gets it on, we have been able to get her almost 4 hours (with breaks in between). It may not be where we are supposed to be, but it's at least progress. She even wore it to church last night. So as you all so lovingly advised me, things are improving. Thanks again for all your support!

[Resilience]

Good for you for looking into VBS and best wishes if that is where this journey takes you.

re bracing: I think we can all relate to being happy with small steps of progress. this is such a difficult time, it does get easier.

To share with you some words that helped me early on, from this forum, is to discuss with your daughter tightness, uncomfortable and pain. Unfortunately the first two are part of the deal, she should never be in pain.

Since she's having a difficult time maybe a trip back to the orthotist would help. we saw ours several times in the first month or so: a little off here, a little off there made all the difference to my daughter!

best of luck!

[Pooka1]

Hi all,

Just thought I would update you all on my daughter's progress. She is currently on the wait list for VBS surgery at Shriner's, so she still must ramp up to the 23-hour/day brace wearing requirement. We had some terrible nights, lots of tears just trying to get her to complete an hour or two. I think some of her intolerance was just emotions, fatigue, and some hyper-sensitivity to the tightness sensation, but with Tylenol 45 minutes before she gets it on, we have been able to get her almost 4 hours (with breaks in between). It may not be where we are supposed to be, but it's at least progress. She even wore it to church last night. So as you all so lovingly advised me, things are improving. Thanks again for all your support!

You might get better pain relief with Ibuprofen. Or maybe stacking two pain meds. It might get her to the required wear time sooner. Check with a pediatrician first of course.

Good luck.

[BaltoMom]

@Pooka1, Thanks, probably a good idea. I used to that when they were younger and their fevers wouldn't respond to just one.

@Resilience, she did just have it trimmed to make it dig less into her legs when sitting, but her pain is mainly in the center of her back, so I think it's just a reponse to the tightness...and we're still at the "break her in" mark on the straps, not the final recommendation mark.

[mommycat]

HI
Just read your thread.My daughter is 8 yrs old and has been in a Boston TSLO type brace for just about a year now.
The first 8 wks were very hard and trying for her as well as her parents.
We had to slowly wien her into it, finally getting to 22 hrs a day. They said 23 but we asked if 22 was ok since 1 hr we believe was not enought time to do anything. Doctor was okay with this.
She had terrible red marks. They are suppose to have red pressure marks but these marks should go away within 30-60 minutes. Hers were not and she ended up getting another brace that was actually tighter fitting and left barley any marks.
We too in the first 6mths were back and forth to the doctor to fix or adjust things here and there.
Amazingly your daughter will get used to it. Even though mine likes being out of her brace when she is out for too long her back will actually hurt and she will ask to put it back on.
Our doctor said this too is normal. My daughter definatly has a very long way to go in hers if it all goes well since she is only 8 yrs old.
I know it is very hard as a parent to see your children suffer. Just try to hang in there and give as much positive feed back to her as you can.
Slowly but surley she will adjust.
Oh and we too gave her tylenol or advil when she first started wearing it. She did better sleeping in it than in the waking hours at first.

[BaltoMom]

Thank you for sharing your experience, Mommycat. It's very helpful to hear what other people have been through. My daughter is finally sleeping in the brace, but we are finding it difficult for her to put in the waking hours after school, as there's been so much going on, it's hard to find time. But we're headed in the right direction, and summer will be here soon. I can tell she will have some very sweaty experiences coming her way as the weather warms up, but we will keep the house cool and stay positive!

[Anna's mom]

I am so sorry to hear about the difficulty your daughter is having getting used to the brace. My daughter, too, was recommended for a Boston brace after her curves progressed 7-8 degrees in four months. We were devastated.
I encourage you to check out the torso rotation strength training (TRS) thread on this forum. We decided to wait on the brace after getting a second opinion from another doc who questioned the benefit of bracing and wanted us to enroll in their bracing study. So instead we took a risk, I did some research, and we found a torso rotation machine at a nearby gym. My daughter has been doing TRS for four months and was stable (yeah!) at her last appt. I know we have only been doing this for a short amount of time, so we shall see what the future holds. I feel for what you are going through and just wanted to share our experience (so far!).

[BaltoMom]

I encourage you to check out the torso rotation strength training (TRS) thread on this forum. We decided to wait on the brace after getting a second opinion from another doc who questioned the benefit of bracing and wanted us to enroll in their bracing study. So instead we took a risk, I did some research, and we found a torso rotation machine at a nearby gym. My daughter has been doing TRS for four months and was stable (yeah!) at her last appt. I know we have only been doing this for a short amount of time, so we shall see what the future holds.

Thanks for your input, mom of Anna. I am definitely feeling the burden of having to decide on the "right" treatment for my daughter when there's no guarantees. I don't have a lot of time to experiment with other treatments, since my daughter is almost 13 -- she won't be a candidate for VBS much longer. I hear about other non-surgical methods that seem to get results, and of course it makes me second guess getting my daughter surgery. But I keep coming back to the reality that if we try them and they don't work, then my daughter will likely be facing spinal fusion which would not give her as much freedom and flexibility as the VBS. If only we could see the future..!

I am happy for you that the exercises are working! Please keep me posted on how Anna is doing. It would be great if the medical community could get enough data where they could identify specific exercises that would become the normal recommendation for scoliosis instead of a brace.

[Pooka1]

Baltomom, please note the potential differences between a child in the adolescent growth spurt and one who hasn't entered it. Completely different ballgame.

Ask your surgeon about this. The main increases in AIS occur coincident with growth spurts as I understand it. Just because someone is doing some exercise doesn't meant it is holding a curve, especially if they are not in a growth spurt. Researchers acknowledge this.

There are 35 people in the entire world who have their cases published w.r.t. TRS and many probably were not in the growth spurt. One of the publications consists in part of double publishing the entire dataset of a previous paper so it looks like more cases than have actually been published. Those peer reviewers were incompetent.

Good luck.

[Bigbluefrog]

hi, my daughter was about that age when she started wearing a brace, she wears the Boston brace about 16 hours or more a day. And does some stretching exercise specific for her curves.

It helps to slowly work up to wearing the brace, did they give you a dotted line and a solid line to progress to, in the beginning it will be less tight. then as she gets used to it, slowly progress to the desired level.

My dd didn't take medicine, but we did get a special mattress memory foam topper,, 3" think from Kohl's dept store...that made it easier to sleep in it.

The worst complaints are ..its too hot, or its hard to breath. Ice packs strategically placed helps for those hot days. And just like anything good stretching and core strengthening exercise...as long as her physician is okay with it...helps for back pain.

Hang in there!!

[TAMZTOM]

My daughter has an S curve, with the worst part being 33 degrees. She is 12 1/2 and her growth plates are still at 0. We just picked up her hard-shell brace Tuesday (I don't even know the proper term, but it comes up high under one arm, just under the chest, down to the hip bones, and has 3 velcro straps in the back).

Did any of you or your children have such an unpleasant beginning with your bracing? Thank so much for any experience you can share!

Hi BaltoMom

My daughter is 10, 11 in April, diagnosed June 2011 with 'radical' curves. She has exercised specifically ever since, achieved some correction and since December also now wears a SpineCor brace.

Your brace sounds like a night-time system, over-corrective. (Contrary to something posted earlier, Boston actually do a night-time brace.) Providence or Charleston braces seem to be common 'over the pond'.

We had a few nightmarish attempts at bracing before the SpineCor. On point was our night-time brace. Many orthotists--even the most reputable--often slam kids into prefabricated shells which are then 'beefed up' with pads, etc. I insisted on a before and in-brace x-ray on the day of fitting; without this precaution and baseline, any orthotist or surgeon's suggestion that "it's normal to have this pain", "it'll pass", etc., is speculation. Without the comparative x-ray, nothing is certain. (In our case, my daughter would have been irreparably damaged if had not been able to compare the x-rays.)

Since our experience, I've corresponded with two other parents who have experienced exactly the same type of problem, i.e., "experts" speculating to the detriment of children. Both parents had their kid refitted, correctly.

I have no idea whether your kid has been correctly fitted or not. I hope she has and that you'll both come out of this period with success.

Regards
Tom

[annm]

My daughter just stopped wearing her "Minnesota" brace after about 6 months in she didn't want to be bothered and I couldn't make her wear it, and she never wore it as much as she should have (20 hrs).
Now that you mention atrophy...that is scary...that was a fear I always had, that her back would get use to the brace and that her curves would just pop back into place when she took her brace off, and we'd be no better off with the exception of stopping the growth of the curve.
BTW she has had pain whether the had the brace on or not. Right now I can't find comfort for her.The surgery sounds more and more necessary.

Hi - sorry your daughter is having trouble with the brace. It kind of sounds like she's wearing the boston brace. My daughter wore one for 3 years. I remember the first weeks being really hard. We had to go back to the orthotist several times and it really never got comfortable. My daughter had to wear it 20 hrs a day to start with and I think that maybe if she could have started wearing it a few hours a day and then gradually work up to the 20 hrs, it might have been easier. My daughter did eventually get used to it, although we were never able to tighten it quite as much as the orthotist did. My daughter wore the brace shirts that the orthotist gave her to wear under the brace, which made it a little more comfortable. Is your daughter wearing the brace shirts? Near the end of her 3 years of wearing that brace, my daughter developed the muscle atrophy - she had a lot of pain when she would take the brace off.

My daughter is now wearing the LA brace and she has to wear it really tight too, but she's finding it easier. I don't know why except that maybe it's just because she was so used to wearing the other brace for so long. She has gotten better correction with this brace.

We are trying to avoid surgery because my daughter is a ballet dancer and the surgery would really decrease her flexibiity. That alone is the motivation that she needs to wear her brace. I don't think any brace is going to be very comfortable. My daughter has plenty of red marks on her body to prove that!! I do wish you luck with this and I hope that it will get easier for the both of you!!!

[leahdragonfly]

My daughter just stopped wearing her "Minnesota" brace after about 6 months in she didn't want to be bothered and I couldn't make her wear it, and she never wore it as much as she should have (20 hrs).
Now that you mention atrophy...that is scary...that was a fear I always had, that her back would get use to the brace and that her curves would just pop back into place when she took her brace off, and we'd be no better off with the exception of stopping the growth of the curve.
BTW she has had pain whether the had the brace on or not. Right now I can't find comfort for her.The surgery sounds more and more necessary.

Dear Annm,

hdugger is absolutely correct in saying that the purpose of the brace is solely to prevent curve progression. The brace is not able to correct a curve, and it is well known and expected by orthopedists that the curve will return to its original size once bracing is stopped. I think unfortunately many orthopedists don't make this clear enough to parents and kids, so some families are choosing to brace their kids under false assumptions. The brace can not correct the curve permanently in adolescents. The only time some permanent correction MIGHT be achieved is with juvenile scoliosis kids who are well under age 10.

Sorry if this comes as a shock. I truly wish the best to your daughter. I understand how scary this all is.

[annm]

Dear Annm,

hdugger is absolutely correct in saying that the purpose of the brace is solely to prevent curve progression. The brace is not able to correct a curve, and it is well known and expected by orthopedists that the curve will return to its original size once bracing is stopped. I think unfortunately many orthopedists don't make this clear enough to parents and kids, so some families are choosing to brace their kids under false assumptions. The brace can not correct the curve permanently in adolescents. The only time some permanent correction MIGHT be achieved is with juvenile scoliosis kids who are well under age 10.

Sorry if this comes as a shock. I truly wish the best to your daughter. I understand how scary this all is.

no I know it won't correct it, I am aware that it's just supposed to stop progression, but I did have a fear of the atrophy of the muscles.