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Thread: Won't wear brace to school

  1. #1
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    Apr 2007
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    Won't wear brace to school

    Hi Everyone,
    Back again after a long abscence seeking all your expert advice.

    Elysia has started refusing to wear her brace to school. She was allowed out of it for 4 hours per day but now takes it off at 8.00am and puts in back on after returning from school at 4.00pm. This means 8 hours out of the brace.

    On x-ray in Feb she was at 38 Thoracic and our surgeon had advised that surgery was inevitable. So question is ..... do I push for total compliance? Is wearing the brace for 16 hours a day better than nothing? Would this be doing anything or is the damage being done by being out of the brace for the 8 hours?

    We can't see the specialist until October but he had wanted to talk about surgery then anyway. There is no way we're going down that track if we can avoid it. She's just started High School and there is so many other drama's in the family at the moment with other problems I just find it's easier for me to give in than deal with the tantrums and dramas over her wearing the brace to school. Any advice welcome.

    Thanks everyone.
    Cheers
    Del
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  2. #2
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    Oct 2005
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    It sounds as if you need to pull in the reins a bit with her. If she has gone out and gotten "plastered" as you say at 12, this is NOT acceptable. Regardless of the other issues going on in the house, what she needs now from you more than anything else is structure. Believe or not, as much as she says that she wants freedom, she wants, and needs boundaries. Right now, all she is thinking about is fitting in with the other kids, and in her mind, having to wear a brace doesn't work. She can only see the present right now. Her brain is not mature enough to see what the long term repercussions of not wearing the brace as prescribed. Now that doesn't guarantee that it will keep her from having surgery, somewhere along the line. Now, the general rule is that the smaller the curves at the time of surgery, the better the correction that can be achieved. If she wears the brace to school, yes, she's likely to get some reactions for a while, but eventually it will get "boring" and the kids will forget about it. There are many anecdotal stories from other kids who have gotten their braces, and not had anyone notice that they had one on unless they were told, or gave them a pat on the back or something like that. A couple even tell of the fun they have with the reactions from others when they pat them on the back, or make contact with them in some other way and find something real hard rather than the typical soft body. Talk to her and find out why she doesn't want to wear the brace to school, maybe it's something that can be easily solved. It may be something fairly simple like not wanting to change for gym in front of others, or something like that. It might be something that the school can help with by making accomodations for her needs. I'm willing to bet that more than anything, her not wearing the brace to school has to do with the fear of being different and maybe not fitting in. BTW, I looked for some of your other posts, and in one, you say that her curves are high and should be in a Milwaukee brace. As I understand it, the Milwaukee brace is usually used only in triple curves (one being a cervical curve). I think I read recently that they are theorizing that the upper curve is purely compensatory and will straighten itself out on its own as the other curves are corrected so that the TLSO brace will work. Hang in there and be firm if you need to be, and perhaps you can find ways to encourage her to be happier about wearing the brace, like looking further into clothing that she would like and that would do more to conceal the brace. Good luck and keep us updated.

  3. #3
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    May 2007
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    Rugby, UK
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    Hi Del,

    Long time no "speak"! I'm sorry to hear about Elysia's reluctance to wear the brace at school but I really don't blame her. It's not only the visibility that's a problem; there's also the discomfort & restriction of movement. We got Immy fitted for both TLSO & Spinecor & then made a decision, based on a number of factors. Immy's curve is high too and the TLSO brace comes up so high that she has to walk like Herman Munster and looks like she's wearing 2 coat hangers. This she was told to wear for 23 hours a day. We look at it now & say "No chance" but if this were the only option I guess we'd go for it.

    Anyway, back to your question, I don't have much knowledge on the subject but I understand that non-compliance is a BIG problem (really?!?!) the fact that it's seen as being a problem must mean that it has an effect. I suppose you need to get her to wear it, but I don't envy you. There, I've been completely unhelpful - sorry.

    Just back to Spinecor for a minute. How is your friend's daughter getting on? You might find compliance less of a problem with Spinecor. I don't know how the health system works in Australia, but could you get a second opinion? We have occasional quibbles about wearing Spinecor from Imogen but all we have to do is point at the TLSO and she does as she's told.

    Wishing you the best of luck,

    Laura
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  4. #4
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    The Slice, forgive me if I'm wrong, but it sounds as though you have read "got plastered" in the UK slang sense, which means "to get drunk".....whereas I think Del means that her daughter got covered in plaster of paris when she was cast for her brace

    Milwaukee braces are used (very rarely these days) for high thoracic curves - not just triple curves with a cervical element. I wore one myself as a child, and had a double curve with a thoracic curve that had a very high apex. I believe they work well, because I have a friend who has a similar high thoracic curve but was put into a TLSO and ended up with a much larger deformity; she wishes she had been put into a Milwaukee as she's been told it would have helped to prevent this. TLSOs simply don't come up high enough to have any effect on very high thoracic curves.

    With triple curves, I can well believe that the cervical curve at the top is likely to be compensatory - but I don't think this would be true of a double curve, because my thoracic curve was the primary one.

    I don't know if you have looked at Spinecor, but I would certainly check it out if I were you, to see if it would be suitable for Elysia. It looks way easier to wear than a TLSO and infinitely preferable to a Milwaukee.

    Good luck!

  5. #5
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    You made me laugh!!!

    Oh you made me have a good chuckle - The slice!!!
    Yes tonibunny is correct - got plastered means covered in plaster!!!! But I can see how you might have thought different - I may need to change my Avitar!!!

    Hi Laura, yes long time no type!!! The doc's appointment was away in October and I have had such other dramas to contend with I just wanted to wish away the Scoliosis problem away for awhile so forced myself off the net.
    I'm having such issues with my girls schools. My eldest one I have managed to secure a spot in a new school for her final two years but for Elysia it's a hard decision. She had made such good progress up to the start of this Scoliosis issue which just happened to coincide with starting high school and now she's just slipping backwards. The school is a private anglican school but just can't control the kids - only a new school 5 years back when we started but the discipline or lack of is getting out of hand.
    My dad has a terminal illness, my mother-in-law 86, is up and down with bad health and I'm in the middle torn between them all, trying to hold down a job and hang onto my sanity!!!! Ahhhhhh!!!

    I did look into the spinecor brace but I think I mentioned that I felt it wouldn't help Elysia. Plus it's quite expensive and since her specialist felt the operation was inevitable at some stage I just had to weigh up everything. The operation is going to set us back $6,000. I feel like a dog chasing it's tail - I want to make the right decisions for Elysia - but feel like I'm going round in circles. But I think your all right - I have to work out some way of getting her to wear the brace to school - but she doesn't concentrate on her school work - just sits and mopes all day about having to wear the brace and while her back is getting the help it needs - her education is suffering.

    Okay I think I've raved enough - now I'm going to go get plastered and it ain't going to be plaster kind!!!! LOL!

    Love you guys!

    Del
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  6. #6
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    Hi Del,

    I understand what you are going through completely! My daughter was diagnosed also at 12. At the time of diagnosis, her cuve was 36*. She was prescribed a Milwaukee brace which she would not wear (can't say that I blame her). She was then prescribed a Boston brace which she wouldn't wear either. I finally gave up the fight of making her wear the brace. Jamie wasn't wearing her brace even eight hours a day. A year later, at the age of 13, Jamie had a spinal fusion. She had reached skeletal maturity and her curves continued to progress. At the time of surgery, her Scoliosis curve was 46* and still going.

    Had she worn her brace, would it have helped slow the progression of her curve? Maybe. Maybe not. I don't dwell on that. If she is wearing the brace 16 hours a day, it has to be better than nothing. I don't have any answers for you, really. It is a decision you have to make yourself. I just wanted you to know I understand what you are going through. Good luck.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  7. #7
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    Del, Hope you're enjoying some of that excellent Aussie wine! Life sounds tough at the moment - I really hope it improves soon.

    I wanted to add - following Mary Lou's post - that if Immy gets to 12 or 13 and 5'3" or so before surgery, we'll be over the moon. Her consultants view is that she's wearing Spinecor to put off surgery until she's grown. If, for Elysia, surgery is inevitable and she's nearly fully grown is there any point in inflicting "brace torture" on her? The other problem is the discipline thing & showing who's boss. Life's a minefield, huh?

    If it were me......... I'd probably let her get away with it until October & then talk to the consultant............. But then discipline is not my strong point.

    Hope the hangover is not too bad.

    Laura x
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  8. #8
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    Oct 2005
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    Oops!!!!!!!! Yes I should have thought of that, just out of context. How embarrassing! My apologies to you AND your daughter. I stand corrected about the Milwaukee brace for high thoracic curves. There are stories here and at Spinekids that girls have actually preferred keeping the brace on because their back starts to hurt after taking the brace off. I know that it's extremely tough at this age for her and to have to be different but trust me, the initial excitement will pass, and the other kids will just go back to treating her like anyone else. In looking at one of your other threads (from the when she first got the brace) I'm curious as to how she is doing with wearing the brace when she does wear it. Is she getting it on okay. Is she tightening it up as she should? I know it's a pain both literally and figuratively, but but if she's not getting it as snug as it should be, that will affect how effective the brace will be. You mentioned in the other post about the brace sticking out at about a 20 degree angle? I'm guessing that you are talking about the top of the brace. If she is in compliance with the brace and it's still sticking out alot, either at the top or bottom, perhaps you can get the orthotist to do something about it. You may have to get tough. Unfortunately, you're probably going to have to use a little "tough love" on this issue for her own good, and you may have to get help from her school as well as she may "give in" and then take it off when she gets to school. Remember that at this age, even one day can seem like forever to her, and she'll have alot of "this is the worst day of my life" days, for alot more reasons than just the brace. Try to get her "on the same page" with you and understand the importance of wearing the brace and the effort to avoid surgery, or get the best possible result if she should need the surgery. You've got to keep her on track on this. As I said, she is only looking at "right now". A week is an eternity for her, so asking her to consider how wearing, or not wearing the brace now will affect her three, four, even five years from now is almost an impossibility. If you have not gotten her on the forum here, or Spinekids, then it would be a good idea to. If you are concerned about her safety, have her use the computer with limited privacy. If the computer is in a central location such as the living room as opposed to her own room. This will make it a little tougher for her to get into trouble. Talk to her about what is and not allowed so far as information given. For her to share her feelings and concerns with other kids and see that she's not alone in what she's dealing with may do alot more to get her to work with you in terms of wearing the brace. Give her an extra hug for me (anonymously). Give yourself one too.

  9. #9
    Join Date
    Mar 2007
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    77

    brace compliance

    We never had good compliance with either of the braces (first Boston brace, 23 hrs/day then providence brace night time only). My daughter was first prescribed the boston brace at about 9 years old, (she is 12 now). She never wore it 23 hrs/day, but did wear it at night (most nights). After 1 1/2 years, she was given providence brace, and we had even less compliance with it (it was larger and more uncomfortable), but she only had to wear it at night. She is scheduled for surgery next week as her curves are now at 61T and 53L. When she wore the boston brace, her curves never were larger than around 30 degrees or so, so, I do believe that even wearing it only at night was doing something. The emotional trauma of wearing the brace is tough on kids, and, at the same time we moved to new school district...it was a constant battle. Looking back, I would focus on a much more vigorous exercising program in addition to wearing the brace as much as possible. I have also had 2 doctors tell me that 16 hours/day is really what they like to see--at least in my daughter's case (but they tell you 23 hrs/day because once kids think they can be out of the brace that they will spend more and more time out of it if they can). One other thought, a woman I have met in our area has a 14 year old who faithfully wore her brace 23 hrs/day for 4 years, was told she was done growing and didn't need brace anymore 6 months ago--now, the curve has continued to progress and they will probably need surgery after all of that anyway. It is a tough decision to make, and some kids absolutely will not wear it. Don't beat yourself up about it if it comes to that.

  10. #10
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    Apr 2007
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    Sydney - Australia
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    Thank you everyone for your input, what life savers you all are. None of my friends understand the dilema that myself and everyone else on here goes through.
    I've discovered that Elysia's problem with wearing it to school is a boy issue. A boy that she likes wants to give her a hello hug in the mornings and this is what has caused most of the recent upheavels. (It seems to be the done thing at this school - that all friends hug each other hello).
    I'm making some enquiries into trying to get her into a girls school - I think it will be easier for her to deal with it there. (She knows a few girls at this school alread).
    And to answer the other questions - no, she isn't anywhere near done growing - she's only risser 0 - she's only at the start of the spurt which is why the specialist said the operation was inevitable. But.... I'm going to stick it out for as long as I can. I've mentioned on here before that there's no way she's having this operation under 50 degrees.

    Thanks everyone!

    Del
    Elysia 16 in Feb 2010
    Sydney - Australia
    Feb 2008 Fused T5-L1 and 5 ribs removed.
    Dec 2009 - Crankshafting
    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

  11. #11
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    Jul 2007
    Location
    Amarillo Texas
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    58
    Dear Del,
    I am at exactly the same place you are. My 12 year old wears a Boston brace and her Dr. told her to wear it 16 hours a day. She has a 36L and 38T curve.
    She hates her brace. When school starts she will be at school from 6 to 4 because of athletics. Do I make her wear a brace to school? She already has dyslexia so school is very hard for her. Will wearing a brace make it physically and emotionally impossible? We are flying to Houston to see Dr. Marco about the spinecore but, I know our insurance company, United Healthcare, won't pay for it. They don't even want to pay for her Boston Brace. We are appealing, but they say our PPO choice plan won't pay. Should we go into debt paying for back braces, when she might need surgery? I am venting. I wish I had all the answers! I think I need to get plastered. HA HA! I'm from Texas. I also thought getting plastered meant getting drunk.
    Becky

  12. #12
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    Oct 2005
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    Del, how does this young man feel about hugging her with the brace on? If she is the only one having the problem with it, then try and help her understand how great it is that her friend is willing to give her the hugs with or without the brace. It's a way of saying that he has accepted her as a friend and is seeing beyond the brace. If this is the case, this boy's actions can go a long way toward helping her to accept the brace, and for others to see her not the brace. As long as this is not getting too serious (I doubt it) it's probably healthy for her. I would talk further with her and get her involved in any decision as to whether to change to an all girls school. She may prefer to stay where she is and make it work.

    If she is only at a Risser 0, then it's even more important to get her compliant with the brace. I will re-iterate, there's absolutely no guarantee that wearing the brace will keep her from surgery, but not wearing the brace will almost guarantee that she will need the surgery. Furthermore, in theory, without the brace the curves could get bad enough that even with surgery she will still have problems with her back and other things as well. From what I've read from others, I'm intrigued that they are only having her in the brace 20 hrs a day being that she's at Risser 0 but I guess they feel that this is enough for her. I would not let her push her luck by only wearing it 16 hours a day.

    Here's something else that may help. Have her read the thread called "changing for gym". This may really help her deal with others knowing about her brace. Please let us know what happens.
    Last edited by The Slice; 08-15-2007 at 05:40 AM.

  13. #13
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    Jul 2007
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    Slice,
    Did you ever wear a back brace?

  14. #14
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    Oct 2005
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    178
    Momw/scoli, no I haven't. I have to try and imagine what it's like. I've read many, many stories and posts, and heard too many stories of kids (by kids) who later regretted not wearing their braces as they were supposed to. No I can't tell you what it's physically like to wear the brace, but I can tell you what it's like to not be like the other kids. I was born with multiple congenital defects including an ASD (a hole between the two atria), one working kidney, a narrowing in the ureter from that kidney to the bladder, to name some of them. I also found out well into my adulthood that I not only sufferer from ADD, but depression and anxiety, and have probably been dealing with that from early childhood. On top of all that for much of my childhood, I was very small for my size. At the age of almost 9, (when I finally started the various surgeries needed, I was about the size of a typical 5 y/o. It wasn't until my mid to late 30's that I really began to understand what role all of this had to play on my emotional and social development.

    I will say that I am in awe of these kids and how resilient they are. Again I have to say that I have read so much from kids and there is a common theme in many of the stories. Most of them talk about the "horrors" of finding out that they had to wear a brace, and their fears as well as the trials and tribulations of trying to get used to the brace. Yes, there are those who never really get used to it and resent it 'til the day they don't have to wear it anymore. But there are so many more strories of kids who did adapt to wearing it and found that their concerns about how others would treat them were unfounded. What I see is something that, at least for those who don't end up needing surgery, that is very temporary. The hard part of it is that it's usually during one of the toughest times in childrens' lives - adolescence, where being "normal" and fitting in are paramount. I have read many stories of kids did a very good job of taking it all in stride and going on with their activities.

    On another note, I was a respiratory therapist for 11 years and have some medical background, so I do understand more perhaps than many what can happen if kids either aren't compliant with treatment, or are diagnosed too late. Yes, the technology has improved tremendously over the years so that permanent disabilities are rare, but it doesn't alter the fact that the more compliant kids are with bracing the better the chances are of avoiding surgery(that is if their curves are caught early enough) and in most cases, if surgery is needed having a very positive effect on the amount of correction achieved. Del's daughter already has a fairly significant curve but is very early in her adolescent growth spurt so doing as much as possible to slow the progression of the curve can make a real difference. I do understand how tough it is for kids at this age and this is sometimes where a little "tough love" comes in. their brains aren't developed enough yet to really understand how this can affect their lives 4, 5, even 6 years later. All they can think about is "right now". As I said to Del, these kids at 12 and 13 will go through many episodes of "this is the worst day of my life" and will later in life be able to look back on it and laugh at how important those things seemed then.

    Sorry this is so long.
    Last edited by The Slice; 08-15-2007 at 10:19 AM.

  15. #15
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    Oct 2005
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    Quote Originally Posted by emma12
    .......One other thought, a woman I have met in our area has a 14 year old who faithfully wore her brace 23 hrs/day for 4 years, was told she was done growing and didn't need brace anymore 6 months ago--now, the curve has continued to progress and they will probably need surgery after all of that anyway. It is a tough decision to make, and some kids absolutely will not wear it. Don't beat yourself up about it if it comes to that.
    Unfortunately this outcome is not surprising but maddening (sp?). Some consider that there is a safety margin when having a child in a brace where the brace continues to be worn for 1 to 2 years after the rapid skeletal growth has completed. If you look at the pattern of growth of the skeleton during puberty, doing this makes alot of sense. The growth spurt starts with the hands and feet followed by the long bones of the arms and legs and the last stage to finish up is the spine. If you watch your children during this time, you'll see what I mean. It's why kids during the growth spurt often look so long, lean, and skinny. The bones of their arms and legs are well into their rapid growth when the spine starts. What you see is what you get, they look long, skinny, and awkward because they are. Their arms and legs are out of proportion with the rest of their body.

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