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back-braces and sleep-away-camp...oh boy!

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  • back-braces and sleep-away-camp...oh boy!

    Sooo...my now 12-yr-old dtr with now under 40 degrees AND my 14 1/2 yr old son with around 20-something degrees are celebrating their second week away from home with all of their friends, activities, and freedom!

    Only one problem: they are also attempting to celebrate freedom from diligently wearing their braces.

    My son has defiantly announced to me that he only plans to wear it at night, to sleep... rather than 19-23 hours recommended by his dr. He's growing like a sunflower, still, and, I fear, his curves may be increasing with this rapid growth.

    My daughter has a more serious curve... and she is avoiding the brace, as well as discussion about it. I know she wears it, but not all day.

    The camp nurse has spoken to them both, but she cannot run after them with the braces. The counsellors are not parents.

    It is frustrating to know that they face 8 weeks of growth and backwards process. The good thing is that they're both very physically active! But I am worried.

    Are any of you out there also dealing with scoliosis kids in sleepaway camp?

  • #2
    Hi Mzl,
    My kids don't have scoliosis but I was curious about the camp your son is at? My son, who is 20 and from Texas, is a counselor at Camp Wildwood in Maine. He said they have alot of boys from New York. Just wondering if it was the same camp; if it is, he would be able to maybe help with the brace wearing at camp. He has seen what I have gone through dealing with scoliosis and is pretty good with the kids.
    Theresa

    April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
    Thorasic - 79 degree down to 22
    Lumbar - 44 degree down to 18
    Fused T2 to sacrum
    June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
    MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

    FUSED T2 - SACRUM 2

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    • #3
      I wish I knew what to tell you. My daughter will be going away for a few days with her friends family so I will be facing a similar situation but, even though she doesn't like her brace and it itches a lot (she is in her third month of wearing) she has been fairly tolerant of it. We just try to impress on her that it is for her own long term good and not wearing it will make the situation worse. She also knows that if she doesn't wear it while away, there will ne NO MORE away trips, no exceptions.

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      • #4
        back-braces and sleep-away-camp...

        Hi MZL,

        I understand your worries for your children and possibly reversing all the hard work they have been putting forth towards correcting their curve, but maybe this will help ease your fears...

        i wore a brace from 11-16 and went to sleep away camp every year for one reason.. freedom from the brace. although my back was improving over time, psychologically i was not doing so well. noone ever knew because i was the happiest and one of the more popular kids at school. but at night i cried myself to sleep for 5 straight years... save for camp. camp was the one time (my camp was for 7 weeks) where i was able to regain some of my self- confidence and feel more in control of my own life.. something i never had between the doctors and my parents telling me what i can and cannot do.. the control came in the freedom for me to choose when to wear it and when to remove it. and it helped enormously.. it gave me an opportunity to feel like a real person making my own decisions and not living under the constant inspection and supervision of the adults around me (knowing now that they care but at the time having tremendous rage towards them for not letting me do what i want and be a kid) those short 7 weeks gave me enough psychological prowess to stay afloat for the next school year (with of course a few dips here and there) and.. i told my mother the same thing.. that i was taking it off and she couldnt do anything about it. (the reason i waited til camp to tell her was obvious.. she wasnt there) looking back, part of the reason i told her was because i wanted her to suffer the way I was (blaming her for my needing a brace at the time). but to my surprise, when i got to camp, although i almost never wore it during the day because of the excessive exercise.. i ALWAYS wore it to sleep, because i was scared and it was comforting.. its what i knew and got used to (another thing to be aware of.. its very important that they exercise because every night they sleep with it they are depending on the brace for support.. when they eventually remove the brace, they will have difficulty using their own muscles to support themselves - after i was allowed to remove it.. i used to hide wearing it to sleep because i felt like i was going to collapse)

        i dont know if that may help you understand what your children are going through a little bit more, but hopefully it does and hopefully you will realize that its very important that they take care of themselves psychologically and emotionally.. two things that doctors do not usually pay attention to when putting a pre-adolescent in a brace.

        i would even suggest therapy!

        let me know if you have any questions. i will be more than happy to answer them

        Jessica

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        • #5
          Dear Jessica,

          Your post is so beautifully written, from the heart, sensitive, and well thought out. Thank you, from the bottom of my heart. Reading this made me feel as if you were actually speaking from my daughter and son's minds... with words which actually got through to me. I almost want to forward it to each of them, but am hesitant, as they are both still in that adolescent stage... hindsight is, indeed, 20/20.

          As a parent of two scoliosis kids, it is very difficult to actually let go and accept the fact that they do need control over their own bodies, and that it truly does affect their emotional health.

          I have not pressed the issue with them over these past 4 weeks... they know what they need to do... I know that they hate it. They ARE both very athletically active, thankfully. And, it has been an extremely hot and humid summer. So, we'll go forward with the bracing when they come home... and accept what we're getting out of whatever time they're spending IN their braces while they are up at camp. That's all we can do... as the tradeoff between psychological and orthopaedic health sometimes resembles treading across a very narrow bridge.

          Just as an aside: I myself had been diagnosed as a teenager with very slight (20 degree) lumbar scoliosis... a fraction of what my kids have... and was never allowed to wear a brace... I did exercises, and lived an active life... went through two pregnancies and easy deliveries, never had much discomfort at all. But, almost suddenly, now, 25 years later, I have just recently been diagnosed with herniated discs at those very vertebrae. It has been extremely painful... and slow to heal and to deal with... now in physical therapy, I'm strengthening my back and psoas muscles...

          Knowing as an adult the amount of pain and discomfort can arise from such a small curvature, it is even more conflicting to see my two children through the bracing issues, and possibilities of future surgery.

          This is to be a continuing experience... thanks for listening and responding.

          mzl

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          • #6
            Jessica, I agree that you wrote a wonderful forum. My daughter probably feels similar to you. She is in ICU at the moment following spine surgery, and doing wonderful with recovery. Her brace made her feel more comfortable too, but she never wanted people to know she wore it. Keep up the good work! Kris

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