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Thread: Brace struggles suggestions?

  1. #16
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    OK, forget it. You guys make this very hard. For the record, my post does not offer any opinion one way or the other as whether bracing in this case is a good idea, and I mentioned absolutely nothing about my daughter's experience with the brace. I thought the poster asked for help acclimating her daughter to the brace, and I tried to give her some suggestions about the physical side of it. That's it. Bye.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  2. #17
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    mamandcrm,

    I think you may be taking personally posts that weren't meant that way - it is sometimes difficult to interpret the written word because you can't hear the tone, but for example, I think Pooka was simply reminding folks how important it is to differentiate AIS from JIS in terms of bracing, which is an excellent point. I'm sure she did not mean that as a personal attack on you or anything like that. I guess sometimes with a forum where folks are posting different thoughts and ideas/opinions, we have to give the benefit of the doubt. Just as you were trying to help with your suggestions (and I think the one about putting the brace on loosely at night and then tightening it after the child is asleep is an excellent one that has worked for others), I'm sure that others were doing the same thing and just making points they felt would be helpful to the original poster's situation.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #18
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    Denise,

    I just wanted to say that my heart goes out to you and your daughter. I have a 20 year old daughter (my son is the one with scoliosis, not her) and I remember all too well the teen and pre-teen years (even at 20 they can still be quite emotional from time to time, although much less often, thankfully!). When my daughter was entering high school you'd think it was the end of the world that she still hadn't gotten the braces off her teeth!

    I remember when David (my son w/scoliosis) was about to have VBS surgery, he wasn't even 6 at the time and so he couldn't take part in the decision on whether or not to have surgery (one of the goals of which was to rid him of a full time brace for the next 8-10 years). I felt the weight of that decision big time, and my daughter was exactly your daughter's age at the time - she said to me 'Mom, I'd be scared to have surgery but I'd choose it in a heartbeat before I'd wear that thing (meaning the brace) to school'. This is the age where they want so badly to fit in, and to be like everyone else. I just wanted you to know that I understand and truly hope that things get easier for you.

    I also think Jess's suggestion that your daughter speak to a counselor or some other person that she can freely vent her feelings to might be very helpful. Certainly couldn't hurt.

    Best of luck and please keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  4. #19
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    and i was saying that the emotional cannot be "aside from.." when a child is so resistant...
    without a dialogue going, little can be accomplsihed, physically or otherwise...
    i realize when a writer is referring to the physical aspects of a treatment...


    "oh, please..." ??
    how about "get over taking things so personally"

    Denise...my heart goes out to you with the decisions you are faced with...

    Maria..your PM's are full

    jess
    Last edited by jrnyc; 01-05-2012 at 11:45 PM.

  5. #20
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    Hi Denise,

    my heart completely goes out to you. Your situation with your daughter is so difficult, and I do not know if there is any easy solution. You definitely got some good suggestions above about ways to make the brace more comfortable. I am curious what your daughter's exact complaint about night-time is, since someone pointed out it is not a self-consciousness issue at that point. It is possible to have a brace that is simply too tight and/or too aggressively corrective (could be in your dd's case from 41 to 13). The amount of physical force necessary to achieve such an aggressive correction may be too painful for her to handle. What does the orthotist have to say about the brace now that multiple adjustments have ben made and it is still painful?

    I was braced myself at age 13 with the same brace as your dd. I clearly remember (and I am now 44) how devastating the brace was for me personally. It would be an understatement to say I hated it. I was forced to wear it to junior high, and I was truly and completely mortified by the experience. Nothing anyone could have said would have made it ok, and for me, I would much have preferred to have surgery than wear the brace. My mother was not super sympathetic seeming, and basically took the tough-luck attitude and we rarely discussed the brace or how it made me feel. She tried making me go to a scoliosis support group for other teenage girls in our area, and I despised it and felt like a freak surrounded by freaks. It did not make me feel better about the brace. I feel like my relationship with my mother suffered due to the brace.

    My own daughter was diagnosed at age 6 with juvenile scoliosis, for which the most common treatment would be 9-10 years of bracing. I can not even begin to describe how much it tore me up to force my daughter into a brace. I tried very hard to put on a positive face for her, but it was absolutely impossible for me to remove my emotions of my own experience from her situation. Even though I tried to be very strict about the brace, she fought me tooth and nail over it, and cried gallons of tears. She refused to wear it to school (luckily one doctor told her she didn't have to). It was not a good situation, and caused a huge amount of grief and stress in our family. In time (a couple months or so) she adjusted to some degree, but bracing was clearly not going to work out for our family for 9-10 years. We ended up opting for non-fusion surgery (VBS) and she had a very positive experience with it.

    My daughter had one brace that she awoke crying every night with her complaining that it was hurting her and crushing her ribs. She would fall asleep ok with it, then awake after several hours sobbing. I do believe it was causing her undue pain. It had a very aggressive correction, too, from 26 to -3 (it was a Providence brace). I tried everything including multiple trips back to the orthotist at Shriner's hospital, and after several months I decided the brace was simply too painful for her and not worth it.

    I am sharing all this to let you know that not all families are successful with bracing, and it is ok. It doesn't reflect negatively on you or your daughter if she can not tolerate bracing. I also feel really bad for her if she is braced with a large curve and a high likelihood of ultimately needing surgery. I think many times doctors suspect a child will progress to surgery despite bracing, but they prescribe the brace anyway so the parents feel better. If the brace is so stressful for your daughter and your family, maybe it is not the best treatment option for her. And that is ok. If she needs surgery it is not the end of the world.

    Please feel free to send me a private message if you wish to talk more. My heart goes out to you.
    Last edited by leahdragonfly; 01-06-2012 at 08:57 AM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  6. #21
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    parenting is the hardest job, without the added stress of illnesses or conditions that the poor children have to deal with...
    so often parents say they wish they could take the problems away, take them on themselves....
    but you can't...so that is adding to your stress...to watch your child suffer and not be able to take it away and make
    it all better....

    Denise, all you can hope for, just in my opinion, is to gather as much information as can be found on the subject of scoli, get
    the best possible medical attention for your child, get other opinons from other doctors, hope or pray as much as is humanly possible,
    and then make the best decisions for your child that any human being could...no one could ask or expect more of you...

    with that said, i hope the experiences on this forum from other parents can give you
    some ideas and comfort...

    best wishes to you and your daughter...
    jess

  7. #22
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    Truly great post Gayle.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  8. #23
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    Quote Originally Posted by LindaRacine View Post
    Truly great post Gayle.
    Seconded.

    .

    .

    .
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #24
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    Quote Originally Posted by LindaRacine View Post
    Truly great post Gayle.
    I agree completely.

    Gayle - while some of us can only try to imagine what our kids are going through, you lived it and I'm sure your perspective is of enormous value to Denise and other parents like her. Thanks for sharing.

    (Jess - I've cleaned out my inbox.)
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  10. #25
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    Thanks everyone for the kind responses to my post. Bracing can be such a hot-button topic since the literature is so controversial. Beyond that though, it is not an easy or benign treatment. I think some kids take to bracing much better than others, and the ones who don't are not bad kids or have bad parents. It just is what it is when a child finds bracing intolerable. Not the end of the world.

    There was some bullshit research awhile back that said when a child reacts negatively to bracing it is the fault of the mother (I am absolutely not kidding!). When I had a discussion with one of Leah's FORMER orthopedists about how much she disliked the brace, he told me it was my fault she didn't like her brace (quoting the bullshit study)!!! Needless to say, we never returned to him again. What a jerk. I was beyond furious about that callous comment.

    I do think I have a unique perspective as a formerly-braced child who is now a parent of a young child with scoliosis. I post my experiences hoping they can help others. Denise, I hope you will jump back in here and let us know how things are going with your daughter. We are here to listen.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  11. #26
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    Quote Originally Posted by leahdragonfly View Post
    There was some bullshit research awhile back that said when a child reacts negatively to bracing it is the fault of the mother (I am absolutely not kidding!). When I had a discussion with one of Leah's FORMER orthopedists about how much she disliked the brace, he told me it was my fault she didn't like her brace (quoting the bullshit study)!!! Needless to say, we never returned to him again. What a jerk. I was beyond furious about that callous comment.
    Bullshit indeed!! And I swear I think I would have slapped the doctor for saying that ('jerk' is being kind).

    I thought David's former orthopedist was bad - she had a very cavalier attitude towards what kids go through when braced as well. I heard things like 'it's not that bad', 'not the worst thing in the world' and 'I treat lots of kids who wear braces' as if it was no big thing and she couldn't grasp, even when I brought VBS to her attention back in 2003, why I would want something for my child other than to have to spend the next 10 years in a brace.

    Someone posted on another thread recently how they went through some sort of training specifically devoted to speaking compassionately to patients (I can't recall their exact position, but it was obviously in the medical field). Maybe they need to make orthos go through that training as well, as we have apparently at least a few who need it badly.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  12. #27
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    I can't thank you all enough for your posts, especially Gayle's.

    It is so heart breaking to watch your child go through this. I can only imagine what she is going through. Gayle, you hit the nail on the head so much with how Sarah is reacting to the brace. She too has stated many times she would much rather have the surgery than to have her life ruined by having to wear the brace. Sarah is a bit hard headed and that makes it hard to be able to tell how much of it is her not wanting to wear the brace and it really hurting her. She complains mostly about her ribs and it stabbing into her. We are not putting it on very tight. We have tried every sleep arrangement we can think of; her bed, an air mattress in the floor, her sleeping in our bed with me (it has a pillow top on it) and last night we gave in and let her sleep on blankets on the floor (hardwoods) because she said that was more comfortable. She works herself up so much fighting the brace that she basically does not go to sleep until she has completely exausted herself. Then she moans through out the night and is tired in the morning.

    We have tried to get her to take something to help her sleep, but she is not big on medication and is resisting that. We also know someone who is willing to talk to Sarah, but Sarah refuses to talk to her. The lady is a teacher that Sarah knows and has had the surgery. She never had to wear the brace. I was hoping by now that Sarah would be willing to at least talk with her by now. We have talked about her talking to someone, but she is not willing to at this time. It may be time to make her talk (or at least sit and listen) even if she does not want to. Unfortunately, there is no magic crystal balls for parents to use on helping to raise their children normally. Not to even mention is it best to stay the course of the brace or go surgery or when is the time to force them to talk with someone.

    As far as the question if the brace was made correctly, initially the guy who measured and fitted her was puzzled by the brace during one of the fittings. But we brought up the concern after one weekend of her wearing it a lot that when she did not have the brace on it looked as if her curve was a lot worst. We started looking at the brace and by the shape (mostly which arm it went under and the side that was longer on the hip) it seemed to us that it would be pushing her in the direction that her curve was naturally going. We admit we are not experts, so we first went back to where to the guy who fitted her. Based on the x-ray, the brace is correct. The doctor says the brace seems to be a well made fitted brace.

    I don't want to ruin my relationship with my daughter. The idea of surgery is scary, but what she is going through right now is not much of a life. Like I said, unfortunately there is no magic crystal ball.

    I do have a call into the doctor again.

  13. #28
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    Wow it really sounds like you have tried and really gone the extra mile.

    By the way, I think the present protocol is > 40* is out of bracing range. That is, bracing is not thought to be able to work above that Cobb angle. Now your daughter is essentially right at that threshold so I am surprised the surgeon prescribed it. Was that his idea? Was it only meant to try to slow progression before a likely surgery?

    I don't think your daughter is wrong to push back if the surgeon didn't first suggest bracing.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #29
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    He suggested the brace first and hasn't said if she will or won't eventually have to have surgery even with wearing the brace till she stops growing. He has been honest with her on what surgery would mean now and the future (not sure how much she actually heard or toned out). He doesn't seem to be anti-surgery, but more let's make it be the last option.

    As with any parent, the idea of surgery for your child is not one you want to face. And there is always hope that surgery would not ever have to occur or that some improvement would be developed between now and then. Guess that is wishful thinking.

  15. #30
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    You are allowed to have wishful thoughts, Denise :-)

    I guess at 41 degrees, your daughter is right at the point where it could go either way in terms of needing surgery. If she was at 50, then that would be a different story.

    In any event, while none of us like the prospect of our child facing surgery (believe me, I know), as others have said, it's not the end of the world and most of these kids do amazingly well and return to their normal lives and activities before you know it (Sharon's two daughters would be prime examples of this).

    That said, you can't fault the doctor for reserving surgery as a last resort as a general rule. However, in this case it seems that your daughter (and you) are enduring an awful lot of pain (both physical and emotional) and heartache over this (bracing) and it may or may not be worth it. That will, of course, be your call and as Jess said so very well all you can do is "gather as much information as can be found on the subject of scoli, get the best possible medical attention for your child, get other opinons from other doctors, hope or pray as much as is humanly possible, and then make the best decisions for your child that any human being could...no one could ask or expect more of you".

    All so very true. So whatever you decide, please don't beat yourself up - you are doing a great job under VERY challenging circumstances.

    Hugs,
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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