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Thread: How tight should a night time brace be?

  1. #211
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    Quote Originally Posted by FAHSAI View Post
    I know some people dont agree with the bracing idea but as I've said before we will try everything possible before surgery, so we will keep up the exercise, TR and night time brace and hope that one or all of them work.
    The only thing that matters is what you and your daughter think. You'll run into every possible opinion on the net - you just find what works and ignore the rest.

    I put some weight on the notion that the people performing the surgery work so hard to keep these kids off the operating table. It's an option, but trying to avoid it makes perfect sense.

  2. #212
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    Quote Originally Posted by FAHSAI View Post
    Just a quick note to inform you of the progress on my daughters brace.

    We went in about a week ago and had the ortho do some tweaking on her brace. She heated it up and made some dimples(outward) in it to accommodate
    Nalina's ribs, and ground off a bit down at her hip bones.

    It fits much better now and even though it is not like wearing kid gloves she is OK with it and sleeps well with it too.
    It still makes me cringe when I have to tighten it up to the marks but she says its not too bad and falls asleep quickly.

    I know some people dont agree with the bracing idea but as I've said before we will try everything possible before surgery, so we will keep up the exercise, TR and night time brace and hope that one or all of them work.
    Your logic makes perfect sense to me (not that it matters what I think - LOL). You have nothing to lose by trying these things - if they work, great. If the don't and she ends up with surgery at some point, you haven't lost anything by trying. But you can't have surgery and then undo it.

    None of us know if things like bracing will work in our child's particular case. As HD indicated, we just go with what works for us and our kids.

    Sometimes a brace does have to be tweaked as you described - by heating it and then bending certain points outward. I am curious if they took an x-ray in the brace? That would really tell if they are achieving the desired correction. Also, some folks try tightening the brace all the way to the marks 'after' the child is asleep, but it sounds like your daughter is tolerating it pretty well.

    Best of luck and thanks for the update!
    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. #213
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    Hi fahsai,

    I'm glad to hear you were able to get the brace adjusted--sometimes it takes several adjustments to optimize comfort, and that is what the orthotist is there to do. It sounds like your daughter is doing very well with her brace so far, which is great. Like Maria said, you have nothing to lose by trying the exercise and other things you mention as well. I hope you will continue let us know how things are going.

    Best of luck,

    Gayle
    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

  4. #214
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    thanks again for the replies

    thanks to all for your replys,

    What you say does matter alot. You have all been through this much longer than we have and it is somehow comforting to know we are not alone.
    We are open to all suggestions and opinions, and you are correct that we must choose the path that we feel the most comfortable with.

    Yes, they did take an X-ray of Nalina in her brace and the ortho said it's doing what she wants it to to. However the Doctor hasnt seen it yet.
    We have an Apt next month(IIRC) and hopefully we will know more then.

    Last nite was the first(and hopefully last) nite I had to take the brace off her in the night. She ate a big dinner very late (too many bread sticks) and she felt like she was going to throw up after she was in bed for a couple hours. I decided the best course of action was to let her out of it. She and I agreed on no more food right before bed time. But other than that she is doing well with it.

    I will keep you posted as time goes on.

    thanks again

  5. #215
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    Well full stomach is different but I do remember giving my daughter pain meds during the first few weeks of brace wear.

    Night time braces seem much easier to wear than 23 hour/day hard braces. It really isn't in the same ball park. While my daughter was fine with the night time brace, even after she was fused she said she would have flat out refused to wear a 23 hour/day brace.
    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."

  6. #216
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    I think my daughter would have trouble with an all day brace too.
    We are actually kind of shocked that she is getting along so well with the night time one.
    Probably just that she is a good sleeper is the only reason it works so well. She goes to sleep easily and would sleep till noon if we would let her. So
    I suspect that is the reason this is working so well.

    Last nite we made sure she didn't eat too close to bed time and she was fine with the brace again.

  7. #217
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    That's great that she is doing so well in it, fahsai! I agree the night brace can be much less difficult to tolerate, especially for the heavy sleepers. After the first few weeks and once the brace is adjusted correctly, it seems like many kids and families can fall into a routine that includes the night brace without much difficulty.

    I know a father through my work whose daughter (who happens to live in Portland BTW) just was released from a night brace. She started wearing the brace at age 10, with curves in the high 20's, and was lucky I guess to complete her growth spurt and menses early. She is now 12 y/o, something like 5'6", and deemed to be through nearly all of her growth. Her orthopedist is still monitoring her, but they think she is essentially skeletally mature and will not need any further treatment. I think these girls with scoliosis who complete their growth early are lucky!

    Keep up the good work. We would love to hear how things are going for you and Nalina.
    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

  8. #218
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    Quote Originally Posted by FAHSAI View Post
    Last nite was the first(and hopefully last) nite I had to take the brace off her in the night. She ate a big dinner very late (too many bread sticks) and she felt like she was going to throw up after she was in bed for a couple hours. I decided the best course of action was to let her out of it. She and I agreed on no more food right before bed time.
    See, you are learning as you go :-)

    When my son was younger, we found that it was best for him not to eat dinner too late. In fact, we would try to make sure his big meal was 2-3 hours before bedtime. Sometimes lying down makes it worse, and some kids are more prone to getting sick or having reflux than others, so you may find that it's best to limit your daughter to only a light snack within a couple of hours of going to bed.

    Of course, there will be those occasions where a late dinner can't be avoided, but missing a night here or there in the brace (or putting it on later) won't make much difference as long as it's not something you do all the time.

    You are doing a great job - keep up the good work!
    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/

  9. #219
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    Quote Originally Posted by Pooka1 View Post
    Night time braces seem much easier to wear than 23 hour/day hard braces. It really isn't in the same ball park. While my daughter was fine with the night time brace, even after she was fused she said she would have flat out refused to wear a 23 hour/day brace.
    I agree completely. In my opinion, a night brace vs. a 23 hour/day brace are two totally different animals.
    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. #220
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    You're right, we sure are learning as we go.
    There are things we do to make it a bit more comfortable for her and sometimes we have to readjust it a couple times before she is OK with it, but those
    events are getting fewer and farther between. She is getting where she knows where it needs to be before I tighten the straps.
    She is getting more and more used to it.

    Also I'm not sure how much more growing she will do. She is 11, 4'8" and 60 lbs, eats like a horse too.
    But I am only 5'8" and my wife is 5'1" so she may not grow too much more. I'd love to see her be taller than me but in truth
    the sooner she stops growing the better for her in some way too.

  11. #221
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    Hi Fahsai,

    Has your orthopedist given you an estimate of how much growth Nalina has remaining? One measure of this is her Risser score on her x-ray, and I have heard of some surgeons judging this from an elbow x-ray.
    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

  12. #222
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    Quote Originally Posted by leahdragonfly View Post
    Hi Fahsai,

    Has your orthopedist given you an estimate of how much growth Nalina has remaining? One measure of this is her Risser score on her x-ray, and I have heard of some surgeons judging this from an elbow x-ray.
    Yes this is such a good point. You can stop with all the bracing and PT if she has little to no growth remaining.

    The other issue is that only a handful of Dr. McIntire's patients were in the growth spurt during the study. That means less than 15 of those patients were actually being studied in terms of using torso rotation to change the curve permanently. And who knows how many of Dr. Mooney's patients were in the growth spurt. I doubt we could get that out of him even if he were alive given his other actions.
    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."

  13. #223
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    Quote Originally Posted by Pooka1 View Post
    You can stop . . . bracing.
    Our son didn't brace, but my understanding is that there's a weaning period even after growth stops. Your doctor will know what the schedule is.

    For PT, even with a smallish curve like your daughters, there's always some risk of progression through adulthood. Dr. Mehta (a very respected doctor in the UK, who also has scoliosis) said that she continues to do PT (side shift, in her case) because she believes that it keeps the spine healthy through adulthood.

    Quote Originally Posted by Pooka1 View Post
    only a handful of Dr. McIntire's patients
    The issue with any treatment other than the big two (bracing and fusion surgery) is that there are just very, very few patients in their studies. I was looking up info about vertebral bracing the other day and realized that the only data I could find from Betz was for 29 patients followed for 2 years. Even for fusion, we don't have any good long term data with the current methodology. So, the unfortunate thing as a parent is that you're really flying blind. The best you can do is try to make sense of what little info is available, figure out the risks and benefits, and guide yourself accordingly. I don't know when, or if, the research will catch up on any of these things.

    Quote Originally Posted by Pooka1 View Post
    I doubt we could get that out of him even if he were alive given his other actions.
    For Pooka, returning to our discussion in the other thread, I would consider this an ad hominen attack, and I do not see what value it's adding to the discussion. It would be enough to just say that you don't know how many of his patients were in their growth spurt. That statement would contain exactly the same amount of good information, without the unnecessary unpleasant speculation.

    [Added correction - 12/29] Upon locating the Mooney paper in question, I discovered that the repeated reference to his dishonesty in double publishing is wholly unsupported by the facts. Mooney clearly states in his 2003 paper that he is using data from his earlier study, how many patients came from both studies, and that the table shows combined results. There is no question of an ethical violation of any kind. This renders moot the entire discussion about the ethics of this event, since it turns out that the said event never happened. I will add this correction to all of my posts concerning Mooney's research to reflect this better information
    Last edited by hdugger; 12-29-2013 at 03:05 PM.

  14. #224
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    Quote Originally Posted by hdugger View Post
    The issue with any treatment other than the big two (bracing and fusion surgery) is that there are just very, very few patients in their studies. I was looking up info about vertebral bracing the other day and realized that the only data I could find from Betz was for 29 patients followed for 2 years.
    Emphasis on "the only data that you could find from Betz."

    What you can find and what is out there are two different things. As usual.

    If there was five or less kids in McIntire's study of 15 kids and the same ratio in the 20 unique patients that Mooney studied (=7) then there were (at most) 12 kids TOTAL being studied for torso rotation in the growth spurt. How did they do? Does it matter when you have 12 patients?

    If there is another scoliosis treatment that is seriously considered with less patients, I'd like to know what it is.
    Last edited by Pooka1; 12-27-2013 at 05:39 PM.
    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."

  15. #225
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    Quote Originally Posted by hdugger View Post
    and I do not see what value it's adding to the discussion.
    Then we are even as I think you obfuscate and dissemble.

    This will not end.
    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."

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