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Thread: succcess wearing brace part-time?

  1. #1
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    succcess wearing brace part-time?

    My daughter 13 just got diagnosed with scoliosis 3 months ago. She has an S curve that progressed from 22 to 27 degrees in 3 months. She just recently got her period and scored 138 on the scoli score. Our pediatric orthopedist is recommending the Boston Brace only at night. He thinks her growth will slow down and her curves are well proportioned I know I should be happy but am also worried since it seems like most people need to wear their brace for 22 hours to be successful. Any feedback will be helpful..

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    Quote Originally Posted by rumson View Post
    My daughter 13 just got diagnosed with scoliosis 3 months ago. She has an S curve that progressed from 22 to 27 degrees in 3 months. She just recently got her period and scored 138 on the scoli score. Our pediatric orthopedist is recommending the Boston Brace only at night. He thinks her growth will slow down and her curves are well proportioned I know I should be happy but am also worried since it seems like most people need to wear their brace for 22 hours to be successful. Any feedback will be helpful..
    I think the best answer you can get is to get a second opinion from an experienced pediatric orthopedic surgeon experienced in spine. I assume this first opinion is from a similar individual.

    There will be no study they can point to in order to support or undermine the claim that wearing a Boston Brace at night versus 22 hours versus not at all will change the natural history. All the surgeons can do is tell you what their observations have been which are, of course, uncontrolled and therefore can't rule efficacy in or out on principle. All surgeons will admit this.

    The good thing is your daughter has a small curve at 13. Chrono age at diagnosis is a very good predictor of progression. The less optimistic news is the 138 which is in the vast grey area where progression is not known to always progress but may. I think only about 1/4 of kids fall in this range but don't take my word on that... I may not be remembering that correctly. At least she is not in the tiny group with very high scores where progression to surgical range is expected.

    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."

  3. #3
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    Brace wear time

    Quote Originally Posted by rumson View Post
    My daughter 13 just got diagnosed with scoliosis 3 months ago. She has an S curve that progressed from 22 to 27 degrees in 3 months. She just recently got her period and scored 138 on the scoli score. Our pediatric orthopedist is recommending the Boston Brace only at night. He thinks her growth will slow down and her curves are well proportioned I know I should be happy but am also worried since it seems like most people need to wear their brace for 22 hours to be successful. Any feedback will be helpful..
    To what does, "scored 138 on the scoli score" refer?

    You may want to consider getting a second opinion regarding the brace. At 13, she may not have much growth left (growth is when the majority of the progression takes place.) If she does, and a brace is prescribed, you may want to look up the recommended wear-time for the Boston Brace, specifically looking at the correlation between wear-time and efficacy.

    My 11yro daughter's ortho prescribed a brace and then told her she didn't have to wear it to school, at after school activities, while playing with friends, or when she was going anywhere. I estimated she would be wearing the brace 13-14 hrs per day at most, so I asked him about minimum in-brace time. He said she probably would not like wearing the brace and 10-14 hrs per day was the best I could expect from a pre-teen. When I asked about the studies that showed wearing a brace less than 16 hrs per day would have the same outcome as NOT wearing the brace at all, he didn't say anything. So I asked if he would point me to the studies that have shown positive results for the Boston Brace at 10-14hrs per day. He replied he didn't know of any such studies, but in his experience most of the kids wouldn't wear a brace out of the house.

    I wondered why he would tell her to be hot, sweaty, and uncomfortable with no change in the expected outcome. Why did he prescribe something and then undermine his own prescription? I either want my child to wear a brace the minimum number of hours with hope for "holding" the curve or to not wear it at all.

    Hoping the best for you and your daughter!

    Please tell us how things go.

    A Mom

  4. #4
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    Quote Originally Posted by AMom View Post
    To what does, "scored 138 on the scoli score" refer?

    You may want to consider getting a second opinion regarding the brace. At 13, she may not have much growth left (growth is when the majority of the progression takes place.) If she does, and a brace is prescribed, you may want to look up the recommended wear-time for the Boston Brace, specifically looking at the correlation between wear-time and efficacy.
    There's no high quality data on this issue that I am aware of.

    My 11yro daughter's ortho prescribed a brace and then told her she didn't have to wear it to school, at after school activities, while playing with friends, or when she was going anywhere. I estimated she would be wearing the brace 13-14 hrs per day at most, so I asked him about minimum in-brace time. He said she probably would not like wearing the brace and 10-14 hrs per day was the best I could expect from a pre-teen. When I asked about the studies that showed wearing a brace less than 16 hrs per day would have the same outcome as NOT wearing the brace at all, he didn't say anything. So I asked if he would point me to the studies that have shown positive results for the Boston Brace at 10-14hrs per day. He replied he didn't know of any such studies, but in his experience most of the kids wouldn't wear a brace out of the house.
    The least confounded study I am aware of is Katz et al (2010) but that is not perfect. That study backs the contention that kids tend to wear the brace far less than prescribed. That study also showed a threshold of about 12 hours as I recall and some indication the brace should be worn during daylight as opposed to during sleep. What studies have been done that point to the 16 hour minimum you mention?

    There are serious questions about the patient population in Katz et al., their scoliscores, and where the lumbar patients were w.r.t. progression and how that fits with comfort and extended brace wear. I'll just remind the reading audience that Katz et al. came out, got an award, and STILL the BrAIST study and randomizing kids to a no-brace control group continued and was not halted on ethical grounds. That's what I mean by significant open questions remaining even after Katz et al. (Non)actions speak louder than words.
    Last edited by Pooka1; 05-16-2012 at 07:05 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."

  5. #5
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    Quote Originally Posted by Pooka1 View Post
    There's no high quality data on this issue that I am aware of.
    Sharon, on the issue of "high quality data", of all people, Weiss has just spoken at the international SOSORT conference in Milan and SLAMMED the quality of data...even including some of his own past papers.

    http://www.scoliosisjournal.com/content/7/1/4
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  6. #6
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    Quote Originally Posted by TAMZTOM View Post
    Sharon, on the issue of "high quality data", of all people, Weiss has just spoken at the international SOSORT conference in Milan and SLAMMED the quality of data...even including some of his own past papers.

    http://www.scoliosisjournal.com/content/7/1/4
    Yes well this research is hard to do. Just because controlled studies with large enough cohort groups are difficult to conduct doesn't obviate the need for them to move this research ball down the field. The literature on bracing and PT that clearly supports or rejects the efficacy of a conservative treatment is very thin. There are known unknowns and unknown unknowns.

    Even articles like Katz et al. (2010) which make some large claims can be correctly criticized. For example, I think 28 of the 100 patients (28%) needed fusion surgery during the course of the study. This percentage is very similar to other studies with similar patient populations. (In fact is might even be worse given the large percent of older, more mature kids in Katz.) This suggest that the dose-response curve for brace wear hours is largely confined to the group who would not progress to surgery anyway. Bracing did not appear to alter the natural history of the group essentially. So it's keeping more sub-surgical curves more subsurgical. So brace wear didn't seem to save a single kid from surgery even in this study. I would like to see the Scoliscore on the kids who progressed and the kids who didn't. And we need to know where the lumbars are. Mention of if they were in the least progressive group and whether it is more comfortable to wear a brace for a lumbar curve versus a thoracic curve were conspicuous by their absence in the paper. I would think if they were scattered about the authors would mention that as it makes their results more robust.

    And it is a wide open question whether the dose response will hold up over time. It is possible that bracing only delays rather than avoids surgery for folks destined to progress. Nothing in hand rules that out and I think the the ethics of bracing are not such that this can remain an open question while still prescribing bracing. People brace to avoid surgery for life FULL STOP. If it not clear that bracing allows them to avoid surgery for life then the compliance rate will drop even lower as it should.

    There is also a problem with data selection and not including the kids with intent to treat. That would probably make the results even more sketchy.

    But the biggest problem is the variability. Look at the ranges in brace wear from successful and non-successful patients. Both ranges are similarly large and overlap extensively. People are not the median and you can't predict much for a particular individual from these data. Had they plotted all the data points I think the scatter would be obvious which would make this point obvious.

    Those and other reasons are why randomizing kids to a no-brace control group continues in the BrAIST study even after this paper was published.
    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."

  7. #7
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    Quote Originally Posted by AMom View Post
    My 11yro daughter's ortho prescribed a brace and then told her she didn't have to wear it to school, at after school activities, while playing with friends, or when she was going anywhere. I estimated she would be wearing the brace 13-14 hrs per day at most, so I asked him about minimum in-brace time. He said she probably would not like wearing the brace and 10-14 hrs per day was the best I could expect from a pre-teen. When I asked about the studies that showed wearing a brace less than 16 hrs per day would have the same outcome as NOT wearing the brace at all, he didn't say anything. So I asked if he would point me to the studies that have shown positive results for the Boston Brace at 10-14hrs per day. He replied he didn't know of any such studies, but in his experience most of the kids wouldn't wear a brace out of the house.

    I wondered why he would tell her to be hot, sweaty, and uncomfortable with no change in the expected outcome. Why did he prescribe something and then undermine his own prescription? I either want my child to wear a brace the minimum number of hours with hope for "holding" the curve or to not wear it at all.
    A Mom
    I agree that it seems pointless to prescribe a brace for 10-14 hours a day because, according to the doctor 'that's the most kids her age will wear it'. If that's not enough time for it to be effective, or as you say to offer any hope of even 'holding' the curve, then why put her through it?
    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/

  8. #8
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    Well actually the dose response curve in Katz extended down to 12 hours a day but there is no evidence any amount of brace wear saved a single kid from surgery in that study.

    They said the time of day was more significant than the total number of hours if you can believe it. Also, amount of correction in brace did NOT correlate with success. The fact that they found evidence counter to some widely held paradigms suggest they are not controlling for anything like a master variable. I bet the Scoliscores track the successes and failures very accurately and everything else in this study and every study is just noise.

    The successful kids wore their brace at least while they are upright which means during the day and at school as opposed to at night while they are asleep. The gods do hate the innocent little children.
    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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