Help!!!! my 13 yr old daughter won't wear her brace

[acl_04]

Well, when I got diagnosed with scoliosis about a year ago (God, it seems so long ago), I had to wear a night brace... So, from about September through May I wore it, every night, except for sleepovers every once and a while. But I was very persistent about wearing it, scared that my two curves, one 30 something and one of them 40 something, would get worse and worse. Well, in those eight months, I had a MAJOR growth spurt- which was good and bad news. Despite wearing the brace, the growth spurt had caused my curves to rise up to 50-60 degree curves! I was shocked, because I had almost NO pain; I was very athletic, and my scoliosis caused me no pain whatsoever... One of my shoulder blades were sticking out and my butt sticked out too... After the surgery (in august

[acl_04]

Originally posted by acl_04
Well, when I got diagnosed with scoliosis about a year ago (God, it seems so long ago), I had to wear a night brace... So, from about September through May I wore it, every night, except for sleepovers every once and a while. But I was very persistent about wearing it, scared that my two curves, one 30 something and one of them 40 something, would get worse and worse. Well, in those eight months, I had a MAJOR growth spurt- which was good and bad news. Despite wearing the brace, the growth spurt had caused my curves to rise up to 50-60 degree curves! I was shocked, because I had almost NO pain; I was very athletic, and my scoliosis caused me no pain whatsoever... One of my shoulder blades were sticking out and my butt sticked out too... After the surgery (in august

Sorry, I got cut off. After the surgery in August, I am now wearing a brace full time. If she does not wear the brace, then the curve will just get worse and worse and you will eventually need surgery. Wearing a brace 14 hours is a lot better than wearing one for 23...

[Tinagale]

I am an adult who should have worn her brace as a teenager but didn't

Please let your daughter read this. I hope it helps.

I was diagnosed w/scoliosis at 14 yrs old. I was immediately fitted for a brace....I absolutely HATED it! It was uncomfortable, hot and most of all hard to fit into the clothes that were in style...which to a teenager can be so depressing. I fooled my mother for quite a long time....I would put the brace on before leaving for school, but would then take it off before I left and would hide it. I was such a fool; to say if I could turn back time is sooooo true. I made such a BAD choice.

I am now 35 yrs old. I did not experience many physical problems from my scoliosis until my mid twenties. At that point, I began to notice that my hips were becoming more obviously uneven. By 25 yrs old or so I began to have back aches. As the years passed the back aches became more frequent and more painful. I now have pain that is undescribable as well as a very noticeable hump in my back and very uneven hips.

As of my last visit to the doctor my curve has progressed to 70 degrees - I had not seen a doctor for approximately 10 yrs but had gotten to the point that I could not stand the pain any longer. I was shocked to hear how much my curve had progressed. I now have sciatica (my curve has placed pressure on the sciatic nerve). This causes my hip to hurt, send pain into my legs and causes numbness. As well, I am at the point that it is impossible to get comforable when trying to sleep.

The worst part of all is that I am the mother of a 10 yr old son and a 11 month old daughter. I am not physically able to do things w/them that I should be able to do. It breaks my heart. The last time I went to the doctor, he said the only thing I can do now is have surgery / fusion of the spine.

Please, please wear your brace. I know you don't know me, but my heart goes out to you. I know how uncomfortable it is, I know you may be worried what the other kids will think or say and I know that is tough...but please take my advice. I would hate to see things progress when if you will wear your brace you can get better.

[Danite]

Oh boy another one that hits home, my daughter was born with scoliosis and wore a baby brace from 4 months old until she was thirteen. At that time she had to have surgery but the brace did help her alot and prevented her curvature from progressing. I sure do understand your fight.
God Bless

[cutiepie2236]

hey ruth!

I am 12 almost 13 *&* in 7th grade. I have a TLSO brace. What kind does your daughter have? I have been wearing my brace for about 3 or 4 months now. I am supposed to wear it to school and everything (23 hours a day is my required amont). I hate it but here are some ideas...start wearing it around her friends, when my friends are over they know about it and all and they support me through it and everything. (thank god for friends) I don''t know if your daughter likes to joke around and stuff but I always let my friends sit on me and I tell them that i have abs of steel! : D lol! Make her a deal....such as if u wear ur brace for 22 (or however many reccomended hours a day) hours a day i will buy you 1 or 2 new hoodies, or something like, having her friends sign it like a regular cast then if it gets to crowded wash it off and start over, or, tell her that if she wears it for 22 or 23 hours for saturday-thursday she only has to wear it for 17 hours on friday or something. Hope i could help keep me posted.

God Bless!

[tikkasmom]

Hi Ruth,

My daughter just got a TLSO brace about 7 weeks ago. Fortunately, she is very responsible and wears it 23/7. I'm very proud of her effort. Her orthotist and Orthopedist both believe she will not have surgery because of her dedication to wearing the brace.

Your daughter might think that having surgery is better than wearing the brace....less effort, faster, whatever. I'm not a doctor, but I've done some research and there are a few things that people have said about surgery.

1. Whatever part of the back is fused is no longer flexible. In the future, bending and moving your back can be difficult depending on where the fusion is.
2. The rods that hold the spine while the back is fusing are left in the body. This is normally not a problem at first, but later in life (like 20 years or so) things could change. You might be looking at another surgery to remove the rods. Yuck!
3. Surgery is VERY expensive. Big Yuck!
4. The surgery takes a very long time (about 4 hours). It is also a long recovery.
5. It's rough on the caregivers too. Parents have to deal with a long recovery and put their lives on hold. They are happy to do this but wouldn't it be nice not to put them through this?
6. There is little risk in wearing a brace. Surgery comes will all the normal risks. Why take those risks if you don't have to?

The people who really need surgery are lucky to have the option. Let the doctor's treat them the best way possible. But, if you have the opportunity to prevent surgery with a brace, it's your daughter's responsibiltiy to do so. You're daughter has been handed an opportunity to empower herself and deal with her own problem.

I wish both of you the very best of luck.
Tikka's Mom

[Mary Lou]

Tikka's Mom,

I agree with most of what you said in the reasons to wear a brace instead of surgery. However, some kids, like my daughter, just couldn't wear a brace. She tried both a Milwaukee brace and a Boston brace and just didn't do well with either one. Even though she tried braces, she still needed surgery which she had December 7, 2004 (she was in the O.R. over 8 hours). She is one of the lucky ones-her surgery/recovery went very well. She was in the hospital less than a week; took prescription pain meds for less than two weeks; returned to school 1/2 days in less than four weeks after surgery; and will be full days within six weeks post-op. Yes, there were risks that we were well aware of, but for us, the braces were just not a good option. Surgery was the best thing for my daughter! She is not self-conscious about her appearance; she doesn't feel "different" from her peers; and she tells me on a regular basis, how happy she is to have had the surgery. She is a very mature 13 y.o. and made the decision to have surgery now rather than later (or never) and has never regretted having it done.

You said it should be the responsibility of the kids to wear their brace. If you read enough on this forum, you'll find that there aren't many kids who are responsible enough to wear their brace on their own without the parents forcing them to do so. Consider yourself lucky that your daugther does well with wearing her brace. I've found that most kids who are diagnosed at 12 or 13 year of age, have the hardes time wearing their braces 23/7.

Mary Lou

[Danite]

Hi Tikka's Mom,

First I agree with you 95%, my only concern is with the view that children should be responsible for wearing the brace. It should be a shared responsibility, but the parent must be the leader. Believe me as a parent of a daughter with scoliosis and surgery,
I understand and appreciate your feelings. But we must remember that most children are not responsible or understand the consequences in life, at the same time I must say, that some parents or adults are also falling short in this area.
We must all do what we can that is reasonable and practical to prevent unnecessary surgery. The MEDICAL MODEL is not always the right answer, and sometimes after we have completed this approach, we are still faced with follow-up or future surgery that may or may not have been necessary if we did not have the surgery in the first place. We find ourself in a predictament where our quality of life is not better but often faced with more independent life issues and acceptance by others, with a reliant on pain medication and more surgery.

God Bless

[tikkasmom]

I guess I hit a small nerve. Please be aware that I , in no way, underestimate the difficulty that a 12 or 13 year old has with this. I also am very sympathetic for any child who faces this daunting task, including my own!

But, I really believe that most (not all, I know) children can handle this if they put their full effort into it. They need to know that we have confidence in them and expect them to make the best effort.

I also understand that the brace simply can't be tolerated by some kids. This is something that only time can confirm. And, I'll bet that some braces are easier than others. I don't know if my kid would be as comfortable if she had a Milwaukee, for example.

I agree that parents and kids have to work together on this. From the posts that I read from the kids on this forum, they (and their parents) are to be congratulated . They seem to have an excellent attitude and are obviously determined to help themselves.

Good luck to you all!

Tikka's Mom

[celestin1170]

My daughter was diagnosed with scoleosis in 2001...her curve started out in the 20 degree area. She was fitted for a brace and wore it regularly for about a month. Once the novelty of it wore off, she refused to wear it!! We tried everything. We bribed her with money and everything. We tried the scare tactics with her. Made her watch a scoleosis surgery performed on the Discovery channel...this didn't phase her whatsoever. I even pretended to call the doctor to set up an appointment for the rods to be put in. That helped for about a day. Over the next few years her back got worse and worse. In the summer of last year her curve had progressed to 42 degrees. By October, it had progressed to 53 degrees and they decided on surgery. She just went to her preop last week and the curve had progressed to 65 degrees!! We can't say for sure that the brace would have helped but we also can't say that it wouldn't have. She has a large hump on her back that is very noticeable. This will get worse as the curve gets worse. She is very embarassed about it. Tell your daughter how important that it is to wear her brace. If surgery can be avoided, she will be much better off.

Kim
Mother of Keri
Surgery January 25, 2005

[jc3]

hi kim
i just read your post and your daughter's whole situation and it sounds exactly like our story. My daughter's curve was 24 degrees a few years ago, given a brace, refused to wear it. We as you did tried everything to get her to wear it. Her curves continued to get worse. When they hit 52 the dr. said that she would need surgery and in 3 1/2 months at preop tests they went to 60 or 62 (i forget already), and here we are now post op 11 weeks. My daughter also had a large hump on her back, which is now gone. My daughter is doing absolutely great! She looks great, no more rib hump and she went back to school full days last week. Good luck with your daughter's surgery, i'm sure everything will go fine. How are your nerves doing with it being so close?
jennifer

[nikyergen]

Hi Kim:
There are several of us in the same boat. My oldest daughter, 16 yrs.old, is scheduled for surgery 3/15/05. It isn't because she didn't wear her brace. She was just diagnosed this past October, 2004. However, my youngest daughter, I have three of them, is wearing a brace (or not!). My oldest daughter rags on her continually to wear the brace because she doesn't want surgery like her. So, even when they have a sibling going for surgery, it doesn't make a difference. It is a battle no matter what. Then there is our middle daughter. Has a slight case of scoli, and just being observed for now.

Hang in there and keep trying. I know how easy it is to give up on it. But, we have to do what is best for our children.

Nikki

[celestin1170]

I'm glad that i'm not the only one that had problems with my daughter not wearing the brace. When we found out that she would need to have surgery, I totally blamed myself. I felt like it was all my fault that she would have to go through that. But everyone told me not to blame myself. We tried everything that we could to make her wear it. There is only just so much you can do.

Jennifer: My nerves are totally shot!! Tomorrow is the big day and I think i'm the most nervous out of everyone! I'm just trying to stay upbeat and optimistic. I'll be so glad when it's over. I will let everyone know how she is doing when I can.
Talk to you soon.

Kim

[jc3]

hi kim
i don't even know if you'll read this before tomorrow, but if you do hang in there. Everything will go fine. The nerves before the surgery is i think worse than the recovery. I am so thankful that i had this board before the surgery because i don't think anyone really understands except for these moms on here that went through it or are going through it. Our prayers are with you. I know tomorrow will be a long day, but we'll be thinking of you and post when you are back home.
good luck- i know exactly how you feel
jennifer

[Danite]

God Bless you and it is one of the most difficult, most challenging and most scary moments in a parents life, when their child is having surgery, we feel so helpless that words can not describe the fear......we all are praying for the best outcome possible and for you to have the necessary strength.

I know as a parent I would not want to go through it again.