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  • Epiphany

    Epiphany: a sudden, intuitive perception of or insight into the reality or essential meaning of something, usually initiated by some simple, homely, or commonplace occurrence or experience.

    I spent a few hours driving alone today. As is often the case, my mind was wandering and I got to thinking about the recent forum member, Snow, and what possible advice one could offer her.
    I’m going though in my head the pro’s and cons of early intervention and weighing the whole bracing discussion/debate and how it might apply to her particular circumstances.
    My mind drifts towards a small plaque my dad used to have on his night stand. The relevance of the words on the plaque came to me as somewhat of an epiphany.
    God grant me the serenity
    To accept the things I cannot change;
    Courage to change the things I can;
    And wisdom to know the difference.

    If ever there was a prayer (or prose, if you will Sharon) that sums up the feelings and desires of a parent of a child with scoliosis, this is it. At least for me anyway.

    I would be lying if I said I wasn’t anguished by our decision to not brace. Serenity on the issue is elusive for me. Similarly, for some it may take courage to brace in the face of actual or perceived uncertainty of the results (regardless of ones view of the issue, we can agree that there are no guarantees).

    I make no claim that I possess the “wisdom to know the difference”.

    There is a moral here. (And I think it goes deeper than “you don’t want to be driving behind CD when his mind starts to wander”)

  • #2
    Always been one of my personal favorites as serene is not my strong suit...
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

    Comment


    • #3
      I just read the conflict on the other thread.
      Made me think of this Seinfeld Episode

      Comment


      • #4
        That's a good post. This is a tough game. The stakes are high. It's easy to have your mind blown.

        I'm not surprised Snow figured out right away you were part of the solution around here, assuming there is a solution of course. There is no guarantee. Life is very unfair.

        While we are being philosophical, I am reminded of something that Christopher Hitchens says when asked if people have free will. He responds that yes they have free will... they have no choice but to have free will.

        Dig on that for a while.
        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


        • #5
          diet and exercise

          concerned dad

          Speaking of epiphanies my brain finally connected just how similar Scoliosis was to other chronic illnesses.

          If somebody asked me what they should do about their allergies, asthma, arthritis, autoimmune disease or even many types of cancer I'd tell them that research strongly suggests that diet and exercise can help. So why should anyone predict that Scoliosis would be different? In fact mainstream scientists have produced strong evidence that diet and exercise can help. It isn't that I didn't already know this but my brain didn't register how simple the concept was.

          Diet

          METHOD OF DETERMINING RISK OF SCOLIOSIS

          [0024] In accordance with another aspect of the present invention, there is provided a method of preventing or reducing scoliosis comprising administering to a subject having scoliosis a therapeutically effective amount of an osteopontin inhibitor (OPN) or a selenium rich diet, whereby scoliosis is thereby prevented or treated.
          [00166] Selenium concentration was reported to be significantly decreased in plasma of AIS patients (42). Selenium and more specifically Se-methylselenocystein, an organoselenium naturally occurring in diet, are used to prevent metastasis in breast cancer as chemopreventive therapy by targeting OPN transcription (43-45).
          Inflammation is a significant factor in almost all chronic illness. The high levels of Osteopontin found in children with Scoliosis is a giant, red flag that inflammation could be the culprit. Although nobody knows for sure I wouldn't bet against taking Fish oil or sleeping in a dark room to maximize Melatonin production. Both of these compounds are anti-inflammatory.

          Exercise

          Thread: Torso Rotation Strength Training for Scoliosis

          16 of the 20 patients demonstrated curve reduction, and although some fluctuation occured, none of the remaining 4 patients had a persistent increase in curve. No patient required surgery or bracing.
          Study: Relation between adolescent idiopathic scoliosis and morphologic somatotypes.

          Subjects with progressive adolescent idiopathic scoliosis are significantly less mesomorphic than control girls. This observation may be of value as a predictive factor for early identification of subjects with adolescent idiopathic scoliosis at greater risk of progression.
          This and other evidence suggests that muscle mass probably protects children from curve progression.

          So there you have it, diet and exercise. It's simple and it's the best thing we've got until technology takes another leap forward.
          Last edited by Dingo; 11-04-2009, 07:00 PM.

          Comment


          • #6
            As usual, another well documented post by my friend Dingo.

            I particularly like how you provide links to your sources so folks can read for themselves and make up their own mind.

            Epiphany is a pretty cool word, no?

            Comment


            • #7
              Thanks CD

              Thanks CD.

              Yeah, I think I like the word epiphany.

              I should have added that not only is Osteopontin a marker for inflammation but Selenium is a well known anti-inflammatory.

              If a specific type of inflammation is the cause of Scoliosis it won't be a surprise to scientists. Polio triggered massive inflammation in the spine's of some unlucky children and Scoliosis was a common side effect.

              Comment


              • #8
                if you get a chance check out the newest paper in Scoliosis Journal.
                My eyes glazed over reading the abstract. However, when I opened up the full (still provisional) paper they started talking about melatonin. Unfortunately, by then I was pretty much wiped. Seriously, check it out. But skip the abstract at first.

                Comment


                • #9
                  Coincidentally this is a really fascinating article to me CD, thanks for posting it! It touches in the relationship between the autonomic nervous system and Infantile Idiopathic Scoliosis, which I'm finding very interesting at the moment due to being recently diagnosed with an autonomic disorder (although this is also related to a probable connective tissue disorder) and having had severe progressive IIS (again, this could well be down to the CTD). It even mentions non-shivering thermogenisis!

                  I can't claim to be a scientist but I'm hoping I can wrap my brain around it enough to make sense of it

                  (Nice to see it's some UK-based research as well - I recognise several of those author names as chaps who have treated some of my friends!)
                  Last edited by tonibunny; 11-04-2009, 07:30 PM.

                  Comment


                  • #10
                    latest study

                    Thanks for the heads up.

                    WOW! This is some tough reading.

                    I'm looking at the part where they discuss Moreau's recent patent.

                    Moreau et al [19,20] found all transgenic melatonin-deficient C57Bl/6J mice [150] devoid of OPN or CD44 receptor were protected against scoliosis, contrasting with wildtype ones. May this be, not because OPN is essential for scoliosis pathogenesis, but because OPN deficiency reduces stress reactions in mice [260]? For, in mice, circulating OPN plays a significant role in the body’s reaction to stress by regulating hormones of the hypothalamic-pituitary-adrenal axis (HPA) [260] modulated by leptin which activates the JAK/STAT pathway. Stressors cause less up-regulation of the stress hormone corticosterone in OPN-deficient mice [260]. This may be tested in the model used for mice: (1) rendered bipedal at 3 weeks of age, and (2) kept in tall cages to make them reach up increasingly for food and water [150]. The developmental stress hypothesis [261], if confirmed, suggests that OPN deficiency through reduced corticosterone up-regulation causes less stress-reaction damage to the neural development of posture and so protects against the scoliosis. If so, these transgenic mice findings [19,20] may not be relevant to AIS pathogenesis.
                    My sense from this is that Moreau owns the theory to disprove.

                    The theory that these scientists have is as of yet untested and it may have been made obsolete by Moreau's recent release.

                    Here is some text from page 68.

                    (15) Some methods for testing the theory’s hypotheses are outlined.

                    (16) The putative hypothalamic dysfunction is thought to have an evolutionary origin in hominid fat deposition which in more than 3 million years, may have provided energy needed sequentially for each of:
                    • trunk width growth at the pelvis (mainly sacral alae), (Figures 5 and 12);
                    • trunk width growth of upper thorax and shoulders (Figures 10 and 11); and
                    • brain growth with pelvic depth increase (Figure 12).
                    We postulate that white adipose tissue still provides for skeletal growth processes in fetal and post-natal normal human development [299-302].
                    These guys have a theory that 3 million years ago hominids evolved a hypothalamic dysfunction that leads to Scoliosis in children? 3 million years and natural selection didn't correct or at least eliminate it?!? If that trait reduced fitness by even 1/1000th it would be long gone before 3 million years. How many different environments ranging from Ice Ages to faminines did this thing have to survive through?

                    ...mathematically impossible bunk.
                    Last edited by Dingo; 11-04-2009, 08:05 PM.

                    Comment


                    • #11
                      autonomic disorder

                      tonibunny

                      due to being recently diagnosed with an autonomic disorder
                      I'm not sure if OPN levels drop back to normal when a child is done growing but in any case high OPN (according to Moreau's patent) is not only the cause of Scoliosis but a significant risk factor in dozens of other potentially fatal diseases.

                      There is every reason to suspect that not only did high OPN trigger your scoliosis but it set you up for additional health problems down the road. This is yet another reason that for most people there is virtually no chance that Scoliosis is triggered by heredity. I am not aware of any gene that common and that deadly to young people in so many different ways.
                      Last edited by Dingo; 11-04-2009, 08:02 PM.

                      Comment


                      • #12
                        Originally posted by Dingo View Post
                        tonibunny



                        I'm not sure if OPN levels drop back to normal when a child is done growing but in any case high OPN (according to Moreau's patent) is not only the cause of Scoliosis but a significant risk factor in dozens of other potentially fatal diseases.

                        There is every reason to suspect that not only did high OPN trigger your scoliosis but it set you up for additional health problems down the road.

                        This is yet another reason that for most people there is virtually no chance that Scoliosis is triggered by heredity. It takes extremely special circumstances for a disease gene to remain common over 1000's of generations.

                        I must look into this further! It's a shame you're not in the shame country as me, I'd love to get you and a bunch of other interested individuals around a table and have a damn good discussion of all the current theories and ideas regarding scoliosis.

                        Comment


                        • #13
                          high osteopontin

                          tonibunny

                          I believe Parkinson's is an autonomic disorder and guess what....

                          Osteopontin is elevated in Parkinson’s disease and its absence leads to reduced neurodegeneration in the MPTP model

                          The Scoliosis gene theory was silly to begin with. But a Scoliosis/Cancer/Autoimmune/Parkinson's gene in young people is.... well... insert your own set of adjectives.
                          Last edited by Dingo; 11-04-2009, 08:16 PM.

                          Comment


                          • #14
                            Originally posted by Dingo View Post
                            These guys have a theory that 3 million years ago hominids evolved a hypothalamic dysfunction that leads to Scoliosis in children? 3 million years and natural selection didn't correct or at least eliminate it?!? If that trait reduced fitness by even 1/1000th it would be long gone before 3 million years. How many different environments ranging from Ice Ages to faminines did this thing have to survive through?

                            ...mathematically impossible bunk.
                            Maybe not so fast there to dismiss their theory, at least on those grounds (By the way, isnt it nice to see a theory advanced along with a proposed way to test it's validity)

                            Anyway, back to the mathematical impossibility aspect. I dont think it is as simple as you made the case sound. Some traits that reduce fitness may have associated aspects that increase survival/fitness and or fecundity. There's an evolutionary term that describes this but it escapes me right now.

                            Comment


                            • #15
                              genes can cut both ways

                              Concerned Dad

                              Anyway, back to the mathematical impossibility aspect. I dont think it is as simple as you made the case sound. Some traits that reduce fitness may have associated aspects that increase survival/fitness and or fecundity. There's an evolutionary term that describes this but it escapes me right now.
                              You are correct, genes can cut both ways. A gene that makes children highly intelligent but physically weak could survive because a particular environment might favor brains. However a gene that makes children highly intelligent but triggers leukemia probably won't last long because no environment favors Leukemia. A gene that triggered Scoliosis and Leukemia and a dozen other disorders has no mathematical chance to spread across the globe. If a gene like that had any chance of survival it would be in a very unique, probably isolated environment. For example Sickle cell is common in Africa but it doesn't exist outside of the Malaria belt. That's the only way that common, genetic diseases that impact young people can survive. Without a special environmental challenge these genes become rare (or extinct) in short order. The math is unforgiving.

                              There is a little girl on the Yahoo board who has both Scoliosis and Leukemia. Until the OPN discovery I never put the two together. Guess what? High levels of Osteopontin are also implicated in Leukemia and other cancers.

                              Osteopontin: a bridge between bone and blood

                              The production of mature blood cells within the bone marrow (BM) is attributed to a pool of haemopoietic stem cells (HSC). It is now evident that HSC reside preferentially at the endosteal region within the BM where bone-lining osteoblasts are a key cellular component of the HSC niche that directly regulates HSC fate. Osteoblasts synthesise proteins that stimulate and inhibit HSC proliferation. In addition to angiopoietin 1 (Ang-1), osteoblasts synthesise and express the highly acidic glycoprotein, osteopontin (Opn), which, like Ang-1, acts as a potent constraining factor on HSC proliferation. Overexpression of Opn is a feature of haemopoietic malignancies, such as multiple myeloma and chronic myeloid leukaemia, although its exact role in the aetiology and progression of these diseases remains unclear. Through osteoblasts and their cell surface and expressed proteins including Opn, bone is able to regulate the tissue that resides within it. In doing so, Opn can be considered a bridge between bone and blood.
                              Pick a common, lethal disease and google it's name with Osteopontin. Chances are good you'll find a connection. I'm not saying I have the answer but something is definitely going wrong in these kids bodies. Kids aren't commonly programmed to become fatally ill.
                              Last edited by Dingo; 11-04-2009, 10:06 PM.

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