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View Full Version : Help!!!! my 13 yr old daughter won't wear her brace



Ruann
10-22-2003, 02:57 PM
I am wondering if anyone out there could give me some insight on how to get my daughter to wear her brace. Maybe someone could share past experiances, maybe someone out there didn't wear there brace and had to get surgery. Maybe someone has pictures to show what her back could look like if she don't wear it. The most noticable curve is in the shoulderblades one shoulder blade sticks out further then the other. I am hoping someone could share somthing with my daughter that would make my daughter change her mind about wearing her brace. Thanks
Ruth

Carmell
10-23-2003, 03:35 PM
Hi Ruth,

I honestly don't think the scare tactic will work effectively for your daughter. I will be happy to share our experiences, and maybe as she learns more about her body and wearing a brace and what it all involves, she will feel better about it.

My daughter was diagnosed just before her 13th birthday with scoliosis - a lumbar curve of about 25 degrees. Within 3 months, her curve progressed to about 35 degrees. She was immediately put in a TLSO brace to try and stop the progression of the curve. I was thinking (like you) that if she would remember what her brother had to go through with scoliosis surgery, she would be VERY committed to wearing her brace. She knew how hard it was on him, as an infant, to have major surgery. Not pleasant. But, it didn't affect her much. She talked about the fact that she understood the risks, but said she didn't care. Her teenage rationalization of "this won't happen to me" was shining through. No amount of coersion would change her. She finally agreed to wear the brace at night, and avoid any daytime wearing.

You are welcome to show your daughter my son's surgical pictures. I have a webpage with a photo journal of his rod implant surgery 2 years ago (click on each photo for a larger view). It shows how invasive surgery can be - the incisions are quite overwhelming. http://pages.ivillage.com/carmellb/surgery

I have heard teens who give their brace a name. When they are angry, they can be angry at the brace (calling it by name). Other kids try to make wearing a brace fun. My daughter actually liked hers in the beginning - she had abs of steel! She would have the boys at school punch her in the stomach - thinking she was pretty cool. They soon learned that there was an object there.

You know your daughter best. If she is able to take a positive view on brace wearing, she'll find it is not such a burden. Otherwise, good luck! BTW, Kara stopped wearing her brace about 9 months later. She is now 17-1/2 and her lumbar curve has been stable at 40-ish degrees for 2+ years now. She also has an upper compensatory curve measuring about 25 degrees. Her spine has a "significant rotation" which means her right hip sticks out quite a bit farther than the left, which makes her spine problems more visible.

My best to you!

isaacschicky
10-26-2003, 10:33 AM
Hi. My name is Hannah and I am 13 and in 7th grade. I have been wearing my brace for about 2 years now. I can understand what ur daughter is going through. HAving a brace is really frustrating, u have no idea! But i knew that i had to do it. U really start getting used to the brace and u learn to love it! I wear jeans and tight shirts and everyone tells me i look great. And i think she is just scared to wear her brace, i deffinatly was at first. U gotta try new things though, even if u think its the end of the world. I thought it was but i wore the brace and it is not that bad! If u have any questions my e-mail is cheerbootyshaker@yahoo.com i would be more than heppy to talk to her, or u. Best of wishes i hope things wok out!

Adge
10-28-2003, 05:51 PM
What my mother did to help me with mine, was to bribe me. For every month that I wore it constantly, for 23 hours a day, I would get like clothes, jewelry, something as a reward. Also--check before she leaves the house if she has it on. My brace was worn under my clothes, and I would take it off before I went to school--my mom never found out. But hey--tell her if not--you'll end up like me--facing surgery.

stormeygal
10-28-2003, 06:04 PM
hi, I just got my brace 2 weeks ago. I really don't like it, but I know I need to have it on. I heard of one mom who found out that her daughter wasn't wearing her brace, and so she would knock on her daughter's stomach every time she saw her to see if she had it on. Also, keep reminding her that if she doesn't wear her brace that her back will keep on curving, and will probably lead to surgery, and she might have back pain. Next week, I'll start wearing the brace to school, and I'm nervous about dressing out during PE. If it hurts her too much at first, start her wearing it at night. Then like a week before she needs to wear it to school, have her start wearing it during the day after school some more( that is if she ever starts to wear it).
I hope she start's wearing it
Good luck,
Rebecca

Attie
11-09-2003, 07:22 AM
Hi Ruann! Having just (2 months ago) been through getting my 12 year old daughter into a brace I know what you are going through! Two weeks before school started in Sept. she was fitted for a TLSO brace. We knew we had to get her "into it" before school started as it would have been so much more difficult once school had started. She wears it 17 - 18 hours/day. It was a very stressful 2 weeks, but through a lot of determination and prayer she was able to do it. Even though she understood why she needed to wear it, the reality of wearing it was tremendously difficult to accept. Being a very strong willed individual she did not get into the brace without alot of verbal and even physical lashing out - usually directed to me, her mom. But, as I said to her, you can kick and scream all you want but in the end you'll do what you need to do. Every day we worked towards increasing the length of time - an hour at a time. After we got up to 6 hours, then we started working on the night. In the beginning the brace might not have been as tight as it needed to be, but at least she wore it. Then, we worked on getting it to the correct tightness. You have to take it one step at a time, and even if you feel like you take a step backwards, just keep on going the next day. I'd like to think we didn't resort to bribery, but in fact we did. We set up small "rewards" for reaching different milestones. We now have a fish tank and a kitten (which I love dearly) as a result! But, you have to do whatever you need to do. Yes, we did reach a point where we talked about "scaring" her into realizing how crucial it was to get into the brace, but thankfully we didn't have to. All I can say is don't give up! Your daughter needs you to be strong and determined for her right now, even if it means she says she hates you while you are putting her into the brace. I don't think I've ever cried so much! While we were going through this period I wished I had had someone to talk to who had gone through this period of adjustment. If you want to talk, email me at kjmalony@msn.com. I know what you are going through. I hope by the time you read this she has started wearing the brace, but even then there are still issues to deal with. Being 12 or 13 is hard enough, but being in a brace makes it all the more challenging. Hang in there and email me if you want to talk! KJM

isaacschicky
11-09-2003, 11:50 AM
Originally posted by stormeygal
hi, I just got my brace 2 weeks ago. I really don't like it, but I know I need to have it on. I heard of one mom who found out that her daughter wasn't wearing her brace, and so she would knock on her daughter's stomach every time she saw her to see if she had it on. Also, keep reminding her that if she doesn't wear her brace that her back will keep on curving, and will probably lead to surgery, and she might have back pain. Next week, I'll start wearing the brace to school, and I'm nervous about dressing out during PE. If it hurts her too much at first, start her wearing it at night. Then like a week before she needs to wear it to school, have her start wearing it during the day after school some more( that is if she ever starts to wear it).
I hope she start's wearing it
Good luck,
Rebecca

HEy my name is Hannah. I am 13. Will if u need some encouragment or anything on wearing the brace please e-mail me. I would love talking to u. Maybe we could share our scoliosis experiences? my e-mail is cheerbootyshaker@yahoo.com please contact me!

Pauline
11-17-2003, 11:14 AM
Hi there. I always used my brace as a weapon aginst my mom when we would get in a fight about something. I hated being different and it was so uncomfortable. They found my scoliosis when I was only 5 years old. I had to wear ugly brown shoes with a lift in them untill I was in the 4th grade then I got my first brace. I wore it will the 8th grade. If you want Im more than happy to talk to your daughter about her brace and all the things she is going through. It wasnt too long ago I was in that situation.

-Pauline

MomHere
11-17-2003, 02:53 PM
My daughter is 14 and was diagnoised with Scoliosis about 2 months (seem a lot longer!). She wears her brace, but not the amount of hours she is supposed to. She is supposed to wear her brace for 14 hours, but only wears it about 8. We keep telling her that if she doesn't wear it longer, she will need surgery. Her curve, when first discovered, was 45 degrees. She says that she doesn't care if she needs surgery, and would rather have the surgery than wear the brace. Now what do respond to that attitude? I am taking her back to the doctors this week because her rib seems to be protuding out further when she lies down on her side. What happens is a person doesn't get any treatment. What does Scoliosis do?

stormeygal
11-23-2003, 08:38 PM
Hi. I'm 13 and my name is Rebecca. I think your daughter is pretty lucky about only having to wear her brace 14hr. I have to wear my brace 20hrs. I don't like it very much, but all of my friends and youth leaders support me, not to mention my family. If your daughter needs to talk to me she can e-mail me at art2cool@yahoo.com. I understand how much she hates the brace, but it is a lot better than having surgary.
Hope this helps,
Rebecca

Ciera
07-16-2004, 03:17 PM
Have you told her that she will have a hump back if she doesnt wear it???
Just keep on telling her that tell her it will Help her sooooo much!!!
I Am 11 I Will talk to her if you want!!!
Ciera,

Ciera
07-16-2004, 03:26 PM
Oops Im so Sorry that other one i sent I Didnt mean.This is what I Ment!Tell her it will help her soooo much it is improving soooo much on my back than before!
I Have wore my brace for 4 years tell her And i'v only complaind about 25 times threw out the years.
Ciiera,

derxz
08-29-2004, 05:07 AM
if you'd like i can take pictures of my x rays and my scars and send them to you. you just gotta be tough with her. This is nothing to kid about, do not let her slip away with this at all. If she doesn't she'll more than likely end up in the hospital and have back pain all the time. Be hard on her, its for her own good. she's too young to realize this, as was i when i had my brace. I would say punishment for not(no friends, phone, computer) and rewards for doing so. i know many parents do not like to punish their kids at all but this is extremly important.

jc3
09-09-2004, 11:31 AM
hi ruth,
i read your post and know exactly what you are going through. My daughter was 12 and had a 24 degree curve which required a brace, she got the brace and refused to wear it. It was a nightmare. We tried everything from bribing her, to punishing her, to having people who had the surgery talk to her, etc... It made the whole house crazy. We even had a new brace made because she said it hurt too much to wear it. Every appointment her curve would get alittle worse until she started menstrating and it got very bad and here we are 2 years later and we just booked surgery for nov. 3rd. She did finally end up wearing it just to sleep at night but obviously that wasn't enough. I hope your daughter ends up wearing it, good luck. It's really tough on them and also very tough on us. Feel free to e-mail me anytime
jennifer

Danite
09-09-2004, 03:23 PM
Very interesting, my daughter Kendra wore a brace at the age of one year old, until she was thirteen. It did help a lot but surgery was still necessary, anyway. We painted and design her braces, some were Wonderwoman, or we painted Mickey Mouse Characters, maybe something like this would work for you. Just food for thought and God Bless.

acl_04
09-14-2004, 10:13 PM
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
09-15-2004, 11:49 AM
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
09-27-2004, 02:25 PM
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
09-27-2004, 04:15 PM
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
01-08-2005, 10:41 PM
:D 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
01-12-2005, 08:17 AM
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
01-12-2005, 08:49 AM
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
01-12-2005, 10:22 AM
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
01-12-2005, 12:35 PM
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
01-20-2005, 08:18 AM
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
01-20-2005, 08:35 AM
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
01-20-2005, 02:45 PM
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
01-24-2005, 09:18 AM
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
01-24-2005, 10:08 AM
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
01-24-2005, 10:24 AM
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.