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Thread: AIS, low level of fitness & poor nutrition... Is there a connection?

  1. #31
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    When there are various long standing research group working on totally independent lines of attack as is the case for AIS, it does seem to suggest that there is more than one etiology.

    But as that one researcher who summed up these various approaches started with, "it's all genetic."

    I think if asked he would certainly add epigenetics as the best explanation so far for why identical twins are only ~75% concordant. I was shocked about how different identical twins could be on the genetic level in terms of gene copy numbers, different active X chromosomes in girls, etc. etc.. These observations seem like good starting points for nailing down the genetics. For example maybe when a particular region of certain genes is copied too many times a child develops AIS. Or too few times. Or some complex combination of different regions being copied different times.

    The point is this is so complex that it may never be worked out beyond "its all genetic." Strong evidence that it is all genetic is the common worldwide AIS rate which also serves to remind folks how we are all more similar than we are different. Humans are extremely well mixed as a species. We are all African.
    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."

  2. #32
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    personally, just my opinion..i find speculation on causes to be a little bit funny and a little bit sad...

    i have scoli...bad...my sisters do not...
    i feel no need to speculate...i think much is genetic...but i was the lucky one out of the three of us to have scoli...
    it doesnt matter to me if i wore glasses, because all three of us did...or that i had bladder infections...i was born with a small urethra...none has to do with the scoli i deal with now...

    i feel badly for anyone spending any time puzzling over the causes...but that's just me...
    the cause is of no matter to me now...just the "fix"

    and that whole thing about bacteria?
    i have friends in CT who practically grew up living in the woods, with bacteria everywhere around them...none have scoli!

    Vit D? i was told by my CA hormone doctor to take it all year, especially in winter, as i live in northeast...but i dont believe the lack of it causes scoli ...my sisters grew up in northeast too...no scoli...

    i never liked sports...but studied dance as a kid...that was my exercise...my sisters didn't like sports...but they don't have scoli

    this is just my outlook...thank goodness for America, where people can believe whatever they want to about whatever they want to...and say so...

    these are just my beliefs...not to insist they are any more correct than any one else's...

    happy holidays...
    jess...and Sparky

    http://i1085.photobucket.com/albums/...g?t=1290644536
    Last edited by jrnyc; 12-20-2010 at 07:04 AM.

  3. #33
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    I think parents are always looking for answers, and why not? We may never find out exactly what causes AIS, but if nobody questions it, there will never be answers. There is no reason to feel badly for anyone wondering about the causes, I'm sure almost everyone on this forum have given some thought to this subject but I don't think anyone is sitting around day after day wasting their lives away thinking about it! I'm certainly not.

    I feel certain there's a familial link in my family, I have 3 immediate family members with skeletal abnormalities and they all share the same physique, I don't think that's coincidence. I also don't know if there are other systemic effects to be looking for, such as in the case of Marfan's. It would be nice to know for that reason especially since my daughter is the one who is most affected by this.
    Last edited by Sherie; 12-20-2010 at 08:58 AM.

  4. #34
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    Quote Originally Posted by Sherie View Post
    I think parents are always looking for answers, and why not? We may never find out exactly what causes AIS, but if nobody questions it, there will never be answers. There is no reason to feel badly for anyone wondering about the causes, I'm sure almost everyone on this forum have given some thought to this subject but I don't think anyone is sitting around day after day wasting their lives away thinking about it! I'm certainly not.]
    That's how I feel Sherie, just b/c we don't know the answers to something doesn't mean we can't wonder about what caused it. I think it's a natural process to question things especially when the diagnosis is new and especially when it's happening to our child. Doesn't mean I/we're sitting around all day wondering and worrying b/c I know I'm certainly not doing that. I have a family to care for, work part time, take care of three (four if you count the neighbour's) cat and seven chinchillas. Maybe those who have been living with scoliosis for many years are past the point of wondering what caused it and just accept it. I'm not there yet. I do accept it, quite well actually compared to others that are: "OMG why me!?" I am still very curious about it all and find the whole subject fascinating so I keep pondering.

    It's Monday again... still waiting for 'the call'.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



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  5. #35
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    As an ex-medical researcher, I'm shocked to learn there's anyone who *doesn't* spend all their time figuring out what causes various diseases. Honestly, it's the most fascinating thing in the world.

    More seriously, as someone who'd like to keep their kid from progressing into the surgical range, I also need to understand the cause (as best I can) in order to figure out what we can do to counterbalance it.

    As to the ideas about cause, it's what I was saying earlier about different eitiologies. Different people have scoliosis caused by different things. Extreme Vitamin D deficiency is actually one of the few known causes of scoliosis - the link between rickets and scoliosis is solid - so the extrapolation that decreased Vitamin D above the "rickets" stage could predispose to scoliosis is pretty reasonable as well. Not proven, but pretty reasonable. Knowing that won't help people whose scoliosis is causes by Marfan's, for example, but it could well lead someone whose kid has a smaller curve to make sure their vitamin D is reasonable.

    That doesn't mean at all that *you* have to look into it, but I feel obligated to both for my son and for other people's children.
    Last edited by hdugger; 12-20-2010 at 03:41 PM.

  6. #36
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    Heh.

    I am routinely shocked much more by other things. For example there is a new Gallup poll out with NON-new findings...
    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. #37
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    Quote Originally Posted by hdugger View Post
    As to the ideas about cause, it's what I was saying earlier about different eitiologies. Different people have scoliosis caused by different things. Extreme Vitamin D deficiency is actually one of the few known causes of scoliosis - the link between rickets and scoliosis is solid - so the extrapolation that decreased Vitamin D above the "rickets" stage could predispose to scoliosis is pretty reasonable as well. Not proven, but pretty reasonable. Knowing that won't help people whose scoliosis is causes by Marfan's, for example, but it could well lead someone whose kid has a smaller curve to make sure their vitamin D is reasonable.
    Was that included in that list of top models for AIS from that talk last year? I don't recall it.
    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."

  8. #38
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    Quote Originally Posted by Pooka1 View Post
    Was that included in that list of top models for AIS from that talk last year? I don't recall it.
    No, it's not AIS (because the cause is known). It's just scoliosis caused by rickets.

    http://www.mayoclinic.com/health/ric...CTION=symptoms

    And if we can continue to peel off these *known* causes, we can throw everyone with those causes out of the research pool for AIS and actually figure out the *unknown* causes.

  9. #39
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    Yes but I thought you were trying to extrapolate from the extreme case of frank Ricketts scoliosis to suggesting that AIS might be just a heretofore unrecognized milder form of Vitamin D deficiency induced scoliosis.
    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. #40
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    No, not that AIS is caused by it. But that *some cases* of AIS are caused by it. Just as some are caused by Marfan's or tumors.

    For the Vitamin D, it's what I was saying about the perfect storm. Scrawny kid + low vitamin D + asymmetric loading may be one cause of AIS. I don't know if it's on THE list, but it's certainly on MY list.

  11. #41
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    Quote Originally Posted by Elisa View Post
    I'm not there yet. I do accept it, quite well actually compared to others that are: "OMG why me!?" I am still very curious about it all and find the whole subject fascinating so I keep pondering.
    Same here, I never thought, "why my daughter, why us" because I figured out a long time ago that bad things happen to good people all the time, it's a fact of life. I would love to have an answer in my lifetime as to why my daughter developed this to such an extreme.

  12. #42
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    So, apparently, the Chinese are interested in the link between Vitamin D, calcium, and scoliosis.

    http://clinicaltrialsfeeds.org/clini...ow/NCT01103115

    American researchers - not so much. Not sure why that would be.

  13. #43
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    i meant, that in some, or many, people's lives, pondering cause has moved on to pondering "fix"...i am speaking of people pondering the cause of their own scoli...those who have had it for 20, 30 years...

    and i would think an EXTREME case of lack of Vit D could cause several things...i didn't think you were referring to severe extreme to the point of rickets...i thought that went out in the days after the sailors figured out what was going wrong on those long trips...

    as i said, i was expressing my opinion, and my opinion only...not that my thoughts about it are better or worse than those of others....

    i wish more people...especially professionals...were pondering "fixes"...because i honestly believe that in 50 or 75 or 100 years from now, things will be SOOOOOO advanced, they will look back on fusion as the dark ages! all surgeries seem to evolve...why wouldn't scoli surgery...?!

    happy holidays...
    jess

  14. #44
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    Quote Originally Posted by jrnyc View Post

    and i would think an EXTREME case of lack of Vit D could cause several things...i didn't think you were referring to severe extreme to the point of rickets...i thought that went out in the days after the sailors figured out what was going wrong on those long trips...
    Yeah, I'm extrapolating backwards from the extreme case (where vitamin D is so low that the bones just buckle under no force) and thinking that just very low vitamin D could make the bones malleable enough that they deformed under strong asymmetrical force. Again, this wouldn't explain all or even most AIS cases, but I think it's worth considering as a cause for some.

    (I think sailors got scurvy, not rickets, from the lack of vitamin C. Rickets, interestingly, is having a resurgence, possibly due to sun block. Or at least, so this source says - http://findarticles.com/p/news-artic.../ai_n55194973/)

  15. #45
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    oh OK...i thought they got both...

    but if sun screen...that we are berated to use, causes anything negative like this, that would be really...well, just REALLY!!

    darned if you do, darned if you dont...no sun screen, cancer...sunscreen, rickets...no way to win!

    also read that low levels of calcium can cause rickets, too...

    i worked with lots of special ed kids in 25 years in NYC
    i know that, as far as pervasive developmental disorders, those with Rett Syndrome are known to have scoliosis

    jess
    Last edited by jrnyc; 12-21-2010 at 03:35 AM.

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