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Thread: Hypokyphosis

  1. #16
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    Quote Originally Posted by 3sisters View Post
    ...hypokyphosis seems to often go hand in hand with the scoliosis AND/OR ballet. (We are NOT stopping dance; the strength and flexibility benefits far outweigh my concerns.)
    We have to make decisions, our's is the same as yours. I'd add that ballet offers an opportunity for these 3 girls to practice practice practice corrective movement patterns. Double-jackpot, be good at your ballet and you correct your curves.

    Just to clarify to scolio1964, 3sisters' daughter is at 12° and 0° in-brace, i.e., about 20 - 30 degrees correction (not 12 degrees correction).

    Off at a tangent (bracing and exercise), but relevant to scolio1964's information, this is from an article I've been 'trying' to absorb:

    Ballet dancers, hypoestrogenism and leptin
    The increased prevalence of mild right thoracic scoliosis in ballet dancers is associated with delayed menarche, secondary
    ameorrhea, anorectic behavior, osteopenia, fractures and prolonged hypoestrogenism [334]. The LHS concept for AIS pathogenesis applied to the scolioses of ballet dancers suggests that presumed low leptin levels [335] are associated with:
    (1) increased selective hypothalamic sensitivity to leptin;
    (2) increased sympathoactivation with asymmetry expressed in the spine as scoliosis;
    (3) limited energy being diverted away from the gonadotroph-gonadal axis, possibly also the hypothalamic-ituitaryadrenal
    axis [335] and GH/IGF (somatotropic) axis; and
    (4) osteopenia and fractures.
    Treatment for the menarcheal delay includes oral contraceptive therapy [335].
    Growth to 21 years! Totally. Scolio1964's point about growth continuing well past the norm is well taken. For these low-BMI subset of scoliotic girls, it may actually be the norm.
    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...”

  2. #17
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    Quote Originally Posted by TAMZTOM View Post
    We have to make decisions, our's is the same as yours. I'd add that ballet offers an opportunity for these 3 girls to practice practice practice corrective movement patterns. Double-jackpot, be good at your ballet and you correct your curves.

    Just to clarify to scolio1964, 3sisters' daughter is at 12° and 0° in-brace, i.e., about 20 - 30 degrees correction (not 12 degrees correction).

    Off at a tangent (bracing and exercise), but relevant to scolio1964's information, this is from an article I've been 'trying' to absorb:



    Growth to 21 years! Totally. Scolio1964's point about growth continuing well past the norm is well taken. For these low-BMI subset of scoliotic girls, it may actually be the norm.
    The article is interesting. I read something about this before and asked our pediatrician if there could be a connection between fractures and delayed menarche. My daughter has had several stress fractures and also fractured her wrist. Our pediatrician didn't think there was any connection, but I have always thought that all of this was connected.

    3sisters' daughter has had an amazing correction in her brace!!

    To answer your previous question, no my daughter has never had an MRI. Do you think she needs one? The doctor has never suggested it to me.

    I will PM you.

    Thanks!

  3. #18
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    Quote Originally Posted by 3sisters View Post
    We're there, too! You said your daughter has hypokyphosis; mine does, too, but has only worn her brace for a few months. Ours is surely not brace induced at this early stage, and isn't for many, I venture; hypokyphosis seems to often go hand in hand with the scoliosis AND/OR ballet. (We are NOT stopping dance; the strength and flexibility benefits far outweigh my concerns.)
    Glad to see you on the nsf. We are in a Cheneau brace (which I think is much like the LA Brace?) and I absolutely plan on seeing her more corrected after brace wear. Our doctor said that although he often recommends surgery for children at my daughter's curves degrees (43 last week,) at the last in-brace xray, upon seeing her in-brace correction, he said he definitely recommends that we continue with our conservative treatment plan of exercise + brace. He expects her to be 30-35 degrees after brace weaning (He is not a quack 'guaranteeing' this, just based on his experience. Her inbrace correction is currently 12 degrees.)
    I'm trying for better, but will take that if possible. We live in Germany, and our doctor IS a surgeon and the head of the spine team at Heidelberg University Hospital. HE has seen enough post brace-wear to acknowledge real correction happens, and I believe it. We did have an MRI and ruled out neurological problems.
    Wow! Your daughter has an amazing in-brace correction! I don't think we've ever had that much of a in-brace correction.

    Yes, the LA brace is similar to the Cheneau brace. My daughter has worn this brace for a little more than a year.

    My daughter has not had an MRI. Her doctor has not suggested it and I have never thought to ask for one.

  4. #19
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    Quote Originally Posted by mariaf View Post
    While there is always an exception to the rule, I would say it is extremely rare for a girl to grow to age 21.
    I think it is rare too, but my daughter's growth has been delayed almost all of her life, so it really wouldn't surprise me if she grew until then. I hope not for her sake. That would mean she would be wearing a brace for 10 years.

  5. #20
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    Quote Originally Posted by scolio1964 View Post
    To answer your previous question, no my daughter has never had an MRI. Do you think she needs one? The doctor has never suggested it to me.
    It's an interesting question who gets referred for MRI.

    I think atypical curves (left T curves, etc.) get referred and also fast moving curves (my Kid 1). In contrast, my Kid 2 had a typical right T curve that didn't ring the bell on speed of progression for sustained periods of time and so was never referred.

    I hope others comment on if they have been referred for MRI and why.
    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. #21
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    Quote Originally Posted by scolio1964 View Post
    I think it is rare too, but my daughter's growth has been delayed almost all of her life, so it really wouldn't surprise me if she grew until then. I hope not for her sake. That would mean she would be wearing a brace for 10 years.
    In your daughter's case, I think that would be an opportunity for more actual permanent correction of her curve if what you have seen to date is any indication.

    Your case is so interesting because I don't think there have been many testimonials on the forum of JIV cases hitting the adolescent growth spurt. And to date, the JIS curve is still behaving like a pre-growth spurt curve with correction retained out of brace. I think that is fascinating.
    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. #22
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    Quote Originally Posted by Pooka1 View Post
    It's an interesting question who gets referred for MRI.

    I think atypical curves (left T curves, etc.) get referred and also fast moving curves (my Kid 1). In contrast, my Kid 2 had a typical right T curve that didn't ring the bell on speed of progression for sustained periods of time and so was never referred.

    I hope others comment on if they have been referred for MRI and why.
    My daughter has a friend in her ballet class who also has scoliosis. She goes to the same doctor as we do and he ordered an MRI on her. The parents said it was because she was having pain and that her curve had progressed pretty quickly. My daughter has pain sometimes and I think it progressed pretty quickly (9 degrees in 6 months).

  8. #23
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    Quote Originally Posted by Pooka1 View Post
    In your daughter's case, I think that would be an opportunity for more actual permanent correction of her curve if what you have seen to date is any indication.

    Your case is so interesting because I don't think there have been many testimonials on the forum of JIV cases hitting the adolescent growth spurt. And to date, the JIS curve is still behaving like a pre-growth spurt curve with correction retained out of brace. I think that is fascinating.
    I think it's frustrating! And so terribly complicated! I guess I never considered her to be a JIV case because she didn't actually start wearing the brace until she was 11. Her doctor has been pretty impressed with her x-rays, though. I am happy with her x-rays too, but I know that she has much more time ahead of her in the brace and sometimes it feels like there's no end in sight.

  9. #24
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    Quote Originally Posted by scolio1964 View Post
    My daughter has pain sometimes and I think it progressed pretty quickly (9 degrees in 6 months).
    That's 1.5* per month. My Kid 1's curve progressed 5* per month for at least 5 months straight. She was referred.
    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."

  10. #25
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    Quote Originally Posted by scolio1964 View Post
    I think it's frustrating! And so terribly complicated! I guess I never considered her to be a JIV case because she didn't actually start wearing the brace until she was 11. Her doctor has been pretty impressed with her x-rays, though. I am happy with her x-rays too, but I know that she has much more time ahead of her in the brace and sometimes it feels like there's no end in sight.
    If she was >10* before she turned 10 then I think that is a JIS case by definition. Someone correct me if I'm wrong.

    Because she has growth left and is below 35* then you might want to consider VBS if the bracing is too hard.

    Didn't your doctor marvel at her out of brace correction? That simply does not happen in most cases because most cases are AIS. He can't have seen that very often.

    Part of my issue with braces is that absent a correction like you have seen with JIS, it is impossible to know if the brace is working with AIS. That's because the best hope is to halt progression but there is evidence that curves, even large ones, stop on their own. There is a huge overtreatment factor in bracing for AIS. If kid knew that, they would be rational to not wear the brace. But if the brace is permanently reducing the curve as in JIS, then it becomes rational if you are near the magic 30* and therefore likely to avoid surgery for life. If my kids had JIS rather than AIS and I saw out of brace reductions bigger than the noise and they were near 30* I certainly would be pushing the brace wearing. But that is a very rarefied example. Few are in that situation so brace wear is still controversial for the majority of kids and will be until someone ponies up adequate evidence it works in AIS.

    Just my opinion.
    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."

  11. #26
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    Quote Originally Posted by Pooka1 View Post
    If she was >10* before she turned 10 then I think that is a JIS case by definition. Someone correct me if I'm wrong.

    Because she has growth left and is below 35* then you might want to consider VBS if the bracing is too hard.

    Didn't your doctor marvel at her out of brace correction? That simply does not happen in most cases because most cases are AIS. He can't have seen that very often.

    Part of my issue with braces is that absent a correction like you have seen with JIS, it is impossible to know if the brace is working with AIS. That's because the best hope is to halt progression but there is evidence that curves, even large ones, stop on their own. There is a huge overtreatment factor in bracing for AIS. If kid knew that, they would be rational to not wear the brace. But if the brace is permanently reducing the curve as in JIS, then it becomes rational if you are near the magic 30* and therefore likely to avoid surgery for life. If my kids had JIS rather than AIS and I saw out of brace reductions bigger than the noise and they were near 30* I certainly would be pushing the brace wearing. But that is a very rarefied example. Few are in that situation so brace wear is still controversial for the majority of kids and will be until someone ponies up adequate evidence it works in AIS.

    Just my opinion.
    Yes, her doctor was kind of speechless after her first x-ray wearing this brace. It's not a brace that he uses, so I think he was skeptical about it at first.

    Her curve was definitely more than 10* when she was 10. She was more than that at age 7.

    I understand what you're saying about the overtreatment in bracing. As a parent, it's hard to know what the right thing to do is for your kid(s). When my daughter reached the magic # of 25*, the doctor said brace and I didn't even think to question it. Mostly because I had surgery when I was young and wasn't given the opportunity to brace. I haven't really had problems from the surgery, but I also wasn't a dancer like my daughter is. My goal is to just prevent the surgery as long as she is wanting to dance, hopefully that will be for life, but who really knows?

  12. #27
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    Quote Originally Posted by scolio1964 View Post
    Yes, her doctor was kind of speechless after her first x-ray wearing this brace. It's not a brace that he uses, so I think he was skeptical about it at first.
    It's probably not the brace per all the papers I have seen on bracing in general and that brace in particular. It's the JIS versus AIS in my opinion.
    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. #28
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    Quote Originally Posted by Pooka1 View Post
    It's probably not the brace per all the papers I have seen on bracing in general and that brace in particular. It's the JIS versus AIS in my opinion.
    You might be right, but why wouldn't the doctor know that? He really thinks it's the brace. He has never said anything about JIS versis AIS. I intend on asking him at our next visit.

  14. #29
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    Quote Originally Posted by scolio1964 View Post
    You might be right, but why wouldn't the doctor know that? He really thinks it's the brace. He has never said anything about JIS versis AIS. I intend on asking him at our next visit.
    I would like to know what evidence he is using to suspect it is the brace. He might feel it is the brace but he will not be able to point to any evidence it is. In the meantime, we have other cases of JIS with curves reduced out of brace using a VARIETY of braces, NOT just the LA brace.

    If it is the brace then why doesn't the world know that LA Braces work to avoid surgery?
    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. #30
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    Quote Originally Posted by Pooka1 View Post
    I would like to know what evidence he is using to suspect it is the brace. He might feel it is the brace but he will not be able to point to any evidence it is. In the meantime, we have other cases of JIS with curves reduced out of brace using a VARIETY of braces, NOT just the LA brace.

    If it is the brace then why doesn't the world know that LA Braces work to avoid surgery?
    I guess he's just using her x-rays as evidence. He is using my daughter as kind of a case study. They don't offer the LA brace here or any brace like it. If he likes the results, he is going to have the orthotist learn how to make this type of brace. That won't happen in my daughter's brace-life, though. Until now, I really thought it was the brace, too, but now I'm wondering about the JIS.

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