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

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  • #16
    You're all making me laugh.

    Elise: I had pretty good nutition, was considered a good athlete- always got picked first, second, or third to be on a team...but that went south as I got to be around 16 + - could no longer throw a softball from outfield to home plate and not have it hit the ground in infield, horrifying....Was also shy my whole life and less so now, although it creeps up and strangles me every so often. I love the sun and so sad that tanning is no longer politically or medically correct.

    Mehera: I'm right-handed, have to change into jammies the minute I get home, almost violently, had absolutely perfect eyesight until I hit 40's... now eyesight is terrible and I have to wear "progressive" prescription glasses - hate them- or wear a 3.5 reader for reading, a 1.75 for TV, and a 1.5 for driving. No particular feeling of being Gollamish or vampirish. Sometimes a little Cinderella ish.

    Ed: Funny about the sit-ups...I remember in about 7th grade being totally embarrassed that I could not do a forward roll anymore without listing leeward and could no longer do a backward roll at all. On a disrelated note, I've been wanting to tell you that it turns out that my mother, benign well-behaved person, is a hose puller. I feel almost proud.

    I also struggled with bladder infections, starting at the age of 12 and randomly striking in clusters throughout my life. I also have a heart murmur. I'm also considered to be very even-tempered and mellow, but about once every 5 years or so, the Irish in me comes out full tilt and watch out! Anyone?
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

    Comment


    • #17
      Hmmm...my turn. My daughter has AIS and the following describes her:

      shyness: I'd call her more "reserved" than shy. If she's comfortable in a situation, there's no shyness at all - in fact quite the opposite as she tries to take center stage.

      handness: she's left handed for writing but does almost everything else with her right hand.

      vision: she's nearsighted and wears contact lenses.

      eating habits: she takes after me. She knows what's healthy and if in the right frame of mind will make healthy choices but prefers junk. She's fairly thin - not skinny but certainly not overweight at all.

      activity level: eh - medium. I've noticed her not being quite as active now that she's in a brace, but that could just be her age (11) and that's it's winter. She takes dance lessons once a week and has PE three times a week.
      Mom to 11 year old DD who was:
      diagnosed 5/09: 8*L, 8*T
      braced 7/10: 17* L, 25*T, 20*C
      x-ray 11/10: 7*L, 17*T, 20*C (x-ray immediately OOB)
      most recent x-ray 06/11: 17*L, 24*T, 22* C (x-ray 24 hours OOB)

      Comment


      • #18
        ok - I'll chime in :-)

        Precious/precocious child - shy adult but borderline extroverted in comfortable surroundings, sometimes attitudinal.

        Right handed (retrained lefty)

        Farsighted, one lazy surgically corrected eye.

        Understand the value of proper nutrition but prefer all comfort food.

        Much more mental than physical.

        Headaches when younger - Tinnitus at 40 something, prolapsed valve - heart murmur that resolved itself in old age, low blood pressure (borderline hypoglycemic in youth) Outside of the obvious, no other medical conditions of note.

        Scorpio on the cusp of Sag with Aquarius rising. Some say that explains everything.

        Comment


        • #19
          Originally posted by mehera View Post

          Not sure I can relate to acting like Gollam or a Vampire, but we all have our idiosyncrasies
          Hmm, he's not as Gollam like these days and does tend to walk more upright than he did when he was younger so maybe that was just a kid thing. He was all over the floor with his body, bending and twisting around. Neither of my other kids did this. I'm sticking with the Vampire theory though b/c he really does hate the sun, brightness of any kind and when it's cloudy and rainy out he says: "what a nice day it is" as well as I have personally seen him hanging upside down in his closet on one of those chin-up bars, hahaha.
          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



          http://tinyurl.com/Elias-Before
          http://tinyurl.com/Elias-After

          Comment


          • #20
            Originally posted by Elisa View Post
            Hmm, he's not as Gollam like these days and does tend to walk more upright than he did when he was younger so maybe that was just a kid thing. He was all over the floor with his body, bending and twisting around. Neither of my other kids did this. I'm sticking with the Vampire theory though b/c he really does hate the sun, brightness of any kind and when it's cloudy and rainy out he says: "what a nice day it is" as well as I have personally seen him hanging upside down in his closet on one of those chin-up bars, hahaha.
            LOL....Blessings to your little Dracul....
            Amy
            58 yrs old, diagnosed at 31, never braced
            Measured T-64, L-65 in 2009
            Measured T-57, L-56 in 2010, different doc
            2 lumbar levels spondylolisthesis
            Exercising to correct

            Comment


            • #21
              Here's a pic of my son that was taken about a year or so ago. See how pasty white he is, slumped in a chair and wearing a housecoat all day long. He's never in normal clothes when he gets home and if it's the weekend he stays in either a housecoat or pj's. He's extremely picky about his socks too and if they aren't super soft and loose, they drive him crazy. He also absolutely hates getting his picture taken and that was long before his back started going all wonky.

              http://i241.photobucket.com/albums/f...e_01/002-2.jpg

              Off topic: We have some snow, woot!
              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



              http://tinyurl.com/Elias-Before
              http://tinyurl.com/Elias-After

              Comment


              • #22
                Originally posted by Elisa View Post
                Here's a pic of my son that was taken about a year or so ago. See how pasty white he is, slumped in a chair and wearing a housecoat all day long. He's never in normal clothes when he gets home and if it's the weekend he stays in either a housecoat or pj's. He's extremely picky about his socks too and if they aren't super soft and loose, they drive him crazy. He also absolutely hates getting his picture taken and that was long before his back started going all wonky.
                Have you ever thought of Sensory Processing Disorder? (sometimes known as Sensory Integration Disorder)
                Mom to 11 year old DD who was:
                diagnosed 5/09: 8*L, 8*T
                braced 7/10: 17* L, 25*T, 20*C
                x-ray 11/10: 7*L, 17*T, 20*C (x-ray immediately OOB)
                most recent x-ray 06/11: 17*L, 24*T, 22* C (x-ray 24 hours OOB)

                Comment


                • #23
                  http://www.quackwatch.com/01Quackery...opics/sid.html
                  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."

                  Comment


                  • #24
                    I've wondered something similar about my son. I'm actually beginning to wonder if he didn't have some vitamin D deficiency around that time. Speaking as a fellow northern latituder, it seems quite possible that our kids could have gotten less sun and be fussy enough eaters that they weren't getting a whole lot of vitamin d from milk.

                    My son had the additional hit of being a homeschooler who, during his late teen years (when all the curving started) would flip his schedule around so that he was waking up late in the afternoon. In Oregon, it's hard to get sunshine if you're out at noon. If you don't get out until 3, it's damn near impossible.

                    So, yeah, I absolutely think it's possible.

                    I still think they have to have some kind of asymetrical loading for the vitamin D deficiency to make sure a difference. So, the bones are more prone to molding because they're weaker, and then the slightly obsessive character of these kids (is yours on the asperger's scale? Mine was pretty far out on the scale as a young kid, and is almost "normal" now, so he was probably mid way on the scale during the curing years) means that they're often in roughly the same position for a long time doing something obsessive.

                    Anyway, yeah, I've been giving this a good deal of thought lately. I think it has to be a perfect storm kind of situation - take a scrawny kid, throw in some odd character traits, move them to some northern climate, and they start twisting up.

                    Or, maybe it was all written in detail in their genes and we can stop second-guessing ourselves . Frankly, I'd *like* to believe that all scoliosis is 100% genetic. It would keep me from feeling like I let him down completely by letting him engage in the risky behavior of sleeping late in a northern latitude. I'd like to. But I don't.

                    Comment


                    • #25
                      Originally posted by Elisa View Post
                      Here's a pic of my son that was taken about a year or so ago.
                      OMG, we have the same child

                      I like the fact that he's not only pale, but he has the cat's throat in the correct position for drinking blood.

                      For the rest of the discussion, I think it's very likely that multiple causes for scoliosis will be found, and that each one will have a different recommended treatment plan. That's one of the things I find so frustrating in all the arguments for/against this or that cause or cure. Maybe we're *all* right, just each for our own subset of the population.

                      Comment


                      • #26
                        Originally posted by hdugger View Post
                        I've wondered something similar about my son. I'm actually beginning to wonder if he didn't have some vitamin D deficiency around that time. Speaking as a fellow northern latituder, it seems quite possible that our kids could have gotten less sun and be fussy enough eaters that they weren't getting a whole lot of vitamin d from milk.

                        My son had the additional hit of being a homeschooler who, during his late teen years (when all the curving started) would flip his schedule around so that he was waking up late in the afternoon. In Oregon, it's hard to get sunshine if you're out at noon. If you don't get out until 3, it's damn near impossible.

                        So, yeah, I absolutely think it's possible.

                        I still think they have to have some kind of asymetrical loading for the vitamin D deficiency to make sure a difference. So, the bones are more prone to molding because they're weaker, and then the slightly obsessive character of these kids (is yours on the asperger's scale? Mine was pretty far out on the scale as a young kid, and is almost "normal" now, so he was probably mid way on the scale during the curing years) means that they're often in roughly the same position for a long time doing something obsessive.

                        Anyway, yeah, I've been giving this a good deal of thought lately. I think it has to be a perfect storm kind of situation - take a scrawny kid, throw in some odd character traits, move them to some northern climate, and they start twisting up.

                        Or, maybe it was all written in detail in their genes and we can stop second-guessing ourselves . Frankly, I'd *like* to believe that all scoliosis is 100% genetic. It would keep me from feeling like I let him down completely by letting him engage in the risky behavior of sleeping late in a northern latitude. I'd like to. But I don't.
                        That is very interesting about the lack of exposure to the sun up north here. We do seem to get a fair bit of sunshine on Vancouver Island compared to the rest of Canada and the winters are quite mild but the boy absolutely hates the sunshine, especially the heat and it is possible that he was/is deficient in vitamin D. He has been taking about 2000 units a day since his diagnosis but I wish I had thought of giving him the supplement before his back went west.

                        To my knowledge he is not on the Asperger's scale and the only thing I can think of that he obsessed over was his computer and computer games and yes he did sit for extensive periods of time playing games and such and that's why when we first noticed his back being off, we were positive it was from spending too much time in the same slouched position so we cut down his time on the computer. I mentioned this to our family doc and he just stood there shaking his head saying that that had absolutely nothing to do with his scoliosis.

                        Here's another pic of him just before we moved up here to CR. That was taken the day I adopted two chinchillas from a lady who rescued them from a filthy fur farm that had been shut down by the authorities, all the chinchillas (that survived) were taken away and adopted out to local people. His back seemed perfectly fine back then which was close to three years ago. He's still pasty though b/c he wouldn't go outside.

                        http://i241.photobucket.com/albums/f...1/108_1974.jpg

                        Just for fun, here's one of me sitting in my chinchilla room with one of my fur beasts. Actually it's the same one Max that my son is holding in the other pic. Max is huge now and very very fluffy.

                        http://i241.photobucket.com/albums/f...e_01/001-2.jpg
                        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



                        http://tinyurl.com/Elias-Before
                        http://tinyurl.com/Elias-After

                        Comment


                        • #27
                          Not to diss docs, but it's called idiopathic for a reason. They'd have a hard time proving that some subset of kids don't get scoliosis due to repeated asymmetical force. They can prove that not *all* cases are caused that way, and they might even be able to show that *most* cases are not caused that way. But, none of us really know enough to rule things out for any case

                          I love the chinchilla pics!

                          Comment


                          • #28
                            Originally posted by hdugger View Post
                            Not to diss docs, but it's called idiopathic for a reason. They'd have a hard time proving that some subset of kids don't get scoliosis due to repeated asymmetical force. They can prove that not *all* cases are caused that way, and they might even be able to show that *most* cases are not caused that way. But, none of us really know enough to rule things out for any case

                            I love the chinchilla pics!
                            Exactly! It really bugged me too when he said: "Oh, his back has been like this for a LONG time... it doesn't get like this overnight you know." He made me feel as though I was a negligent mother b/c I didn't notice it before and he just stood there in disbelief. I told him that really, his back just starting looking off recently and it was his sister who actually pointed it out to us but it was like he thought I was making it all up.

                            Well, since his original diagnosis close to a year ago, he has gone from a 47* to apparently a 75* and some of you say it's more like an 85* or more AND those x-rays were taken exactly three months ago and he now has a huge rib hump with stretch marks. Yeah, take that Mr. GP know it all/nothing! >_<

                            On a positive note, my son's sudden switch to wholesome foods and his increased appetite looks good on him. He's definitely got a bit more substance to him now and he wrote out his shopping list yesterday and it was full of good stuff including spinach. Now why didn't he like all this good stuff a year ago eh?

                            Edit: Glad you liked the chinchilla pics. I've got a few hundred more I could post if you like, lol.
                            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



                            http://tinyurl.com/Elias-Before
                            http://tinyurl.com/Elias-After

                            Comment


                            • #29
                              Originally posted by hdugger View Post
                              For the rest of the discussion, I think it's very likely that multiple causes for scoliosis will be found, and that each one will have a different recommended treatment plan. That's one of the things I find so frustrating in all the arguments for/against this or that cause or cure. Maybe we're *all* right, just each for our own subset of the population.
                              I wouldn't be surprised at all if in the future there are a whole lot more classifications than there are now, each with their own cause(s). It would be nice, like you said, to learn that it is 100% genetic so that we can stop what-if-ing and move on. But I guess even more than that, I wish for one single cause like a chemical imbalance in the brain that could actually be corrected with a pill. ahh, to dream...
                              1993, Age 13, 53* Right T Curve w/ Left L compensatory
                              2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

                              http://livingtwisted.wordpress.com/

                              Comment


                              • #30
                                Originally posted by Elisa View Post
                                He's still super sensitive to clothing and the absolute first thing he does when he gets home from school is strip down and put on his pj bottoms. When his new fleece hoodies aren't fluffy on the inside after washings he won't wear them b/c he says they're uncomfortable. Needless to say I've got a rack of them in my own closet b/c they are perfectly good but not to him.

                                He has beautiful straight teeth with not a single cavity. Does that mean anything, hehe?
                                This is weird because Sheena is very sensitive to clothing too! When I bought her clothing she would ALWAYS feel the inside first, she didn't even care much what it looked like outside (she's actually very fashion conscious now but still will only wear soft clothing, no tags). I have never known anyone that sensitive to clothing, none of the rest of us are like this in any way. She's also very thin, near sighted, introverted and a thinker. She takes after my dad's side physically who is also very thin, has mild scoliosis and a leg length discrepancy as does my sister. There's definitely something genetic going on but I can't find anything specific to these symptoms.

                                On the other hand, I've seen plenty of kids who are athletic, dancers, gymnasts, etc.
                                I can only say that in my family, there is a familial link. My daughter says she does not want to have biological children because of the fear of passing it along.

                                Oh, she also had a neurological reaction to the first pertussis vaccination, which later came back to haunt her in middle school, she actually came down with whooping cough and was sick for 3 weeks. I always wondered if there was a link. I had pre-eclampsia too with her (probably not related at all, but since I had absolutely no predisposing factors, it's just odd).

                                I've given this a lot of thought over the years and would be interested to find out if these are all symptoms of something bigger going on.

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