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Thread: How many of you have more than 1 child with Scoliosis?

  1. #16
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    Quote Originally Posted by Pooka1 View Post
    That's what all the flat-earthers say in response. Besides the pouting of course.
    And you consider yourself a scientist? LOL.

  2. #17
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    Quote Originally Posted by Pooka1 View Post
    emphasis added



    Is this not EXACTLY what I have been banging on about? It this not EXACTLY what I have been saying?

    Sponseller and others may think it works in some cases but no competent, sane surgeon claims there is good evidence it works. And Sponseller is admitting EXACTLY that. This is medicine and science and must be that way.

    That is my entire point. Bracing may work in some cases. This research is so hard that I can well imagine a (small) population out there who might avoid surgery, perhaps for life with the right brace at the right time with full compliance. But there is a huge false positive signal here (~3/4 of the braced kids) that has to be dealt with.

    And when talking about making baby kids wear a hard 23 h/d brace, you can't just KNOW it, you have to SHOW it in my opinion. Sponseller claims it's still worth a try. Other surgeons disagree. When you see opinions all over the map like that it is proof the jury is still out.
    Number one, major spinal surgery has risks associated with it, as you well know from seeing the disastrous results for some people. That is why there is agreement that the chance to reduce the risk of needing surgery is worth the effort. even by surgeons. If a surgeon doesn't think it's worth avoiding that risk, if at all possible, I'd call that hubris.

    Number two, the fact that Americans do not get very good bracing results is not surprising to me IN THE LEAST. Even in the studies they do, they stop bracing their patients at 18 months post menarche when it's been proven even growth after Risser 5 occurs. I think it's appalling that American surgeons put these kids in braces for such a short time period and then after all that effort leave them to continue to progress after weaning them from the brace. That's what I think is appalling. Spinekids is full of them.

  3. #18
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    I think the chance of someone thinking 23 h/d bracing is worth a try absent convincing evidence is much higher in the population who DOESN'T have to wear the brace than in the population that does have to wear the brace.

    This is why we hear the comment from time to time that bracing is for the parents and not the kids.

    It is not contestable at this point that most braced kids are braced needlessly. I mean you can contest it but that would be as perverse as contesting the fact of evolution and a ~4.55 billion year old earth and an oblate spheroid earth.
    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."

  4. #19
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    Some recent examples of how researchers and bunnies use terms...

    "environmental" factors in IS.

    Bunnies: "environmental" = germ theory and sun exposure

    Researchers in this field: "environmental" = maternal age and hormone levels at puberty.

    There are occasional papers where researchers use "environmental" in the bunny sense (I saw one that called earth latitude an environmental factor) so there is some grounds for confusion about this. But most of the uses I think we have come across in this sandbox of researchers using the term, it is obvious it doesn't mean what the bunnies mean.

    Same with "multifactorial" which is most often used as a mode of GENETIC inheritance as far as I can tell, NOT to mean germs plus genes. But again, you can probably find some sloppy usage by researchers that only serves to confuse us bunnies further.

    The researchers get to define the terms and the bunnies must fall in line. That's the rule.
    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. #20
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    Let's just be clear. NO ONE is forcing anybody to brace their kids.

    You must be an "environmental scientist". All politics and not much science.

  6. #21
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    Multifactorial, even as used by the scientific community, means a complex combination of many genes plus environment, often a genetic predisposition that will not be expressed unless certain environmental conditions exist. Examples include most common disease conditions: heart disease, cancer, or, for our purposes, scoliosis.

    (In contrast, a disease with multiple *genetic* factors (but no environmental factors) is termed polygenic.)

    A quick google confirms this definition.

    From the NIH - (http://ghr.nlm.nih.gov/handbook/muta...mplexdisorders) "Researchers are learning that nearly all conditions and diseases have a genetic component. Some disorders, such as sickle cell anemia and cystic fibrosis, are caused by mutations in a single gene. The causes of many other disorders, however, are much more complex. Common medical problems such as heart disease, diabetes, and obesity do not have a single genetic cause—they are likely associated with the effects of multiple genes in combination with lifestyle and environmental factors. Conditions caused by many contributing factors are called complex or multifactorial disorders."

    From the center for genetics education -
    (http://www.genetics.com.au/pdf/factsheets/fs11.pdf)
    "Multifactorial inheritance refers to the pattern of inheritance of common health problems and rarer conditions caused by
    a combination of both genetic and other factors that may include internal factors such as ageing and exposure to external
    environmental factors such as diet, lifestyle, and exposure to chemicals or other toxins
    • Multifactorial conditions have in common that they do not always develop despite the suggested presence of a faulty gene(s)
    • The inherited faulty gene(s) make the person predisposed ie. at increased risk for developing the condition but unless other
    factors are present, the condition may never develop at all"

    Or, if you like your general reference work, from the brittanica
    "human genetic disease (in human genetic disease: Diseases caused by multifactorial inheritance)
    Genetic disorders that are multifactorial in origin represent probably the single largest class of inherited disorders affecting the human population. By definition, these disorders involve the influence of multiple genes, generally acting in concert with environmental factors. Such common conditions as cancer, heart disease, and diabetes are now considered to be multifactorial disorders...."

    This is the same definition used by the Scoliscore folk.

    If there's an alternate definition of the term, it's not easily googable - I've been through two pages of links, and variations of this definition are the only ones I find.

    I now return you to the fight without end.

  7. #22
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    *tiptoes in*

    I don't have kids, but for the OP (Original Poster), once my scoli was discovered at age 9, they tested my sister who is 4 yrs my senior. She too has it. So does my mom. So do all the women on my mom's side. I'm the only one who drew the short straw.

    My parents opted for the brace and I am glad they did. I truly believe that I made the best choices I could - as did my parents - up through today with the maintenance of my back. Had I done the surgery at age 9, what would have become of me? This was the Harrington Rod period and that was the suggested surgery then. Yes I did 4 years of braces, 3 of which were in the horrifying Milwaukee, and I did end up with fusion surgery - but not until age 38. Could I have waited a few more years? Yes, but it fits my life better now than later as we want to adopt and I want to be able to lift my babies. I couldn't do that at the point I had reached (bend and lift more than about 5 lbs) pre-op. It is my hope that my life will get back to a better than prior "normal" once I've fully recovered from this surgery.

    My sister has a 40* upper and 20* lower. She's never had a day of pain from scoliosis, never wore a brace, nothing. I think that's the way with most.

    Anyhow, that's my contribution here.
    Female, age 38
    4 years of bracing, concluded at 42*upper/38*lower
    currently 64*upper/40*lower
    Fused T3-L4 on Feb 23 2011
    now 32*upper/18* lower

  8. #23
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    @Lilysaidwhat, that is an excellent contribution.

    The problem we continually run into on this group is that while folks are entitled to their own opinions, they are NOT entitled to their own facts. Folks struggle with this because society provides cover for such behavior in other venues. So it bleeds into venues where the rubber meets the road like with serious medical issues. This is the liability of countenancing counterfactual nonsense in some areas.
    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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    Thanks, Lily (and I'm really glad your surgery worked out so well, other than the idiot brace fitter).

    There's a small subset of posters on the board who have what seems like a strong familial form of scoliosis. Roher01 in her family, you in yours, and a few others. I suspect the same thing is going on in my brother-in-law's family - his daughter (my niece) and his daughter's daughter, both the only girls, both have scoliosis.

    For most of the posters on the board there's a far less obvious family link. I think it's there (because it seems like there's some genetic contribution for just about every common disease), but just to address the maybe implied question from the original poster, I think there's a very good chance that if you have one child with scoliosis you won't have a second child with it.

    If your child has congenital scoliosis (instead of idiopathic), there's no known genetic contribution at all.

    I don't know if the genetic link is stronger or weaker in cases of juvenile or infant scoliosis - maybe someone with kids in those onset ages will know.

  10. #25
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    http://journals.lww.com/jspinaldisor...blings.15.aspx

    Journal of Spinal Disorders:

    "Mirror Image" Congenital Scoliosis in Siblings

    Abstract

    Summary: Congenital scoliosis, which is caused by isolated anomalies (as opposed to multiple spinal anomalies and myelomeningocoele), is usually a nonfamilial condition. In rare instances, however, a congenital spine deformity is genetically determined. We herein report a brother and sister with a nearly identical "mirror image" congenital lumbar scoliosis. We conclude that the presence of a congenital spine deformity necessitates the screening of other siblings for a similar anomaly.
    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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    http://www.orthojournalhms.org/volum...ripts/ms04.htm

    Molecular Basis of Human Vertebral Segmentation Defects

    This project is a pilot study being conducted by Children’s Hospital-Boston and the Stowers Institute for Medical Research and will help facilitate research on vertebral segmentation defects. The major goals of this project are to: (1) identify genes associated with congenital scoliosis by sequencing genes known to be associated with vertebral anomalies in mouse models, (2) explore the environmental exposure and familial history of children with severe congenital scoliosis, (3) evaluate the association between Delta-like 3 and MESP2 mutations and Jarcho-Levin syndrome in sporadic cases (non-familial cases) and severe cases of congenital scoliosis, and (4) identify mutations in newly identified genes involved in somitogenesis in mouse and chick embryos in severe cases of congenital scoliosis.
    Apparently, it is "all genetics."
    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."

  12. #27
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    http://web.jbjs.org.uk/cgi/reprint/50-B/1/24.pdf

    (emphasis added)

    1 . Idiopathic scoliosis is a familial condition.

    2. The findings suggest either dominant or multiple gene inheritance, but a larger series is
    needed before a firm conclusion can be drawn.
    The word, "familial" is also a major stumbling block in this sandbox. I have posted several references indicating that researchers call "idiopathic scoliosis" "familial" whereas a few references use the term, "familial" to denote the autosomal dominant inheritance pattern. Using it in the latter sense in no way means that the cases that do not appear to be inherited in an autosomally dominant fashion are not also genetic.

    Last, "isolated" IS cases must correctly be termed "apparently isolated" unless they radiographed every relative, living and dead. It is arguable that that has never been done.

    To the OP, the chances are low that a sibling will be affected unless speaking about identical twins where the concordance is ~75%.
    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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    Here's a good summary from a 2003 book called Abnormal Skeletal Phenotypes that describes two forms of scoliosis - a multi-factorial form and an autosomal form.

    "Most specialists tentatively assume a multifactorial inheritance, with a genetic tendency to the deformity that is triggered in different indiviudals by different external factors. A familial autosomal dominant form of scoliosis has been mapped to chromosome 17."

    This jibes pretty well with what I see on the forum - a large group with scoliosis who may or may not have a scattering of relatives with scoliosis, and a smaller group with a clear family inheritance. I actually didn't know the stronger genetic form had been mapped to a specific chromosome.

    I kind of wonder, then, why people with a clear genetic inheritance are lumped in with the idiopathic group, since it seems like the cause of their scoliosis *is* known. The only people who I'd consider to be idiopathic are that larger group where they have some tendency towards the disease, but where the environmental trigger that pushed them over the edge is unknown.

  14. #29
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    Quote Originally Posted by hdugger View Post
    Here's a good summary from a 2003 book called Abnormal Skeletal Phenotypes that describes two forms of scoliosis - a multi-factorial form and an autosomal form.

    "Most specialists tentatively assume a multifactorial inheritance, with a genetic tendency to the deformity that is triggered in different indiviudals by different external factors. A familial autosomal dominant form of scoliosis has been mapped to chromosome 17."

    This jibes pretty well with what I see on the forum - a large group with scoliosis who may or may not have a scattering of relatives with scoliosis, and a smaller group with a clear family inheritance. I actually didn't know the stronger genetic form had been mapped to a specific chromosome.

    I kind of wonder, then, why people with a clear genetic inheritance are lumped in with the idiopathic group, since it seems like the cause of their scoliosis *is* known. The only people who I'd consider to be idiopathic are that larger group where they have some tendency towards the disease, but where the environmental trigger that pushed them over the edge is unknown.
    Thank you hdugger. That is what I have observed also.

    Of course, I'm still open to the possibility that it might be genetic in some way. LOL. It is, however, idiopathic until they actually find a decisive connection.

    VERY INTERESTING about the relationship with chromosome 17. I just looked it up and one of the genes located on this chromosome is RAR-Alpha retinoic acid receptor! Remember my daughter's apparent central nervous system issues with balance were favorably impacted by the retinoid isotretinoin? And I posted that study that showed that retinol (I think) repaired spinal defects in-utero? I'll have to look at the other thread tomorrow when I have more time but that is rather exciting perhaps. Perhaps there is a connection to retinoids and scoliosis. Retinoids affect the Hox genes in embryological development, perhaps they affect some sort of spinal growth or central nervous system function during adolescence too. Ehlers Danlos syndrome is associated with chromosome 17 also.

    "Retinoids

    Several retinoids can act on activation/repression of Hox- and related genes. These retinoids include All-trans-retinoic acid; 11-cis-retinoic acid and retinol as metabolite of the retinoic acid. "

    http://www.iephb.nw.ru/labs/lab38/sp...x_pro/rar.html

    Hox genes are a group of related genes that specify the anterior-posterior axis and segment identity of metazoan organisms during early embryonic development. These genes are critical for the proper placement of embryonic segment structures (such as legs, antennae, and wings in fruit flies or the different vertebrate ribs in humans)
    Last edited by Ballet Mom; 03-20-2011 at 01:20 AM.

  15. #30
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    What do you feel about these two findings of the author's?

    6. Mental defect and epilepsy are the commonest findings associated with scoliosis.

    7. In adolescent scoliosis the age of the mother is significantly raised by comparison with the expected figure for the normal population.

    Mental defect and epilepsy the most common findings associated with scoliosis? Really?

    Next.

    Let's see. Only 25 percent of the cases of scoliosis in this study had any family member with scoliosis...checked out to the third degree relatives. Does that necessarily mean the other 75 percent are familial?

    I also notice that the author excluded anyone that didn't have a rib hump. Has the author then excluded some of the potentially non-familial cases of scoliosis? None of the girls I've seen with scoliosis in ballet have rib humps. Shoulder blades can stick out a bit more than the other, but no rib hump. I can see sharp curves in the spine of one girl and yet when she bends over...no hump. I have assumed it was due to all the stretching they do but perhaps they simply have a different type of scoliosis. My daughter had a small rib hump when first diagnosed, but it has disappeared. Was it 30 percent of professional ballerinas have scoliosis? And yet, they wouldn't be hired if they had a rib hump these days. There was a story of a ballerina who had a fifty+ degree curve and didn't even know she had scoliosis! That could only happen if she didn't have a rib hump. I'm sure these girls would be glad to know they don't have structural scoliosis or idiopathic scoliosis. Perhaps they could be hypnotized or anesthetized and their curves would go away!

    Until scientists can show the genes that are causing the scoliosis in the 75 percent of scoliosis patients that don't have family members with scoliosis, it seems to me they are simply assuming and the cause remains idiopathic. Most diseases and conditions have genetic predispositions to them.

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