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  • How do I know what's best?

    Hi, my 11 year old daughter(just turned 11 in April) has been diagnosed with "S" shaped scoliosis, with curves measuring Left t-4 24*, right T8-9 23* and left L1-2 12*. This is all so stressful to me as I find conflicting info on what to do! We see the orthopedist on Monday, and I have all my ducks in a row so to speak. I have researched treatment options and various braces. My pediatrician (who discovered the curve when I took my daughter for knee pain!) says since she is pre-mens, and has alot of growth left her opinion is to start a brace to keep curves from worsening, but to let the specialist decide. My nerves are shot, and my daughter is an emotional wreck as she is active in track, and ballet, tap and jazz dance! Can anyone offer any advice to ease our minds??
    Thanks alot
    Last edited by hannahsmom; 04-30-2004, 02:45 PM.
    jeannette

  • #2
    Hi Jeanette,

    First, take a deep breath and try to take this one step at a time. Getting an emotional handle on the new diagnosis will be the hardest step. I hope you will be seeing a pediatric orthopedist who specializes in scoliosis/spine malformations. This person should be the best to help you put together the right "game plan" to follow as your daughter continues to grow. Her curve measurements sound like they are well-balanced, but the measurements could be a little different, depending on who is doing the measuring. There is always a +/- 5 degree margin of error, even when the same person does the measurement.

    Your daughter is doing the best thing for her back and body - being an active pre-teen. Doing exercises and strengthening steps is the best way to keep her back strong and as supported as possible. Being active is the best thing she can do!

    Most scoliosis patients have a diagnosis of the condition, and then go on with their daily lives. Many don't require invasive treatment. Knowing what to watch for and what to do if something does come up is good ammunition. Having a good ortho on your side helps with this part. Let us know what the ortho says on Monday. Hopefully meeting with the doc will help you feel better, and help your daughter understand about her body better.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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    • #3
      Thanks

      Thanks Carmell.
      It is so hard right now waiting to see the specialist. The ortho we are seeing is the pediatric specialist in our area, and he is highly recommended. I have decided though that I will get a second opinion, probably from Children's Memorial in Chicago if I don't feel satisfied with his opinion. We, as moms always want to do what's best for our kids, and it's so hard when we feel powerless to make things all right! It is so nice to have found this website, and to feel I am not alone, and can share my feelings with others who have gone through the same thing!
      thanks again and God Bless

      Jeannette
      jeannette

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      • #4
        reply to Hannah's mom (and maybe others)

        Hi there,

        I have an idea that you may or may not know about... I recently saw a website run by a company called Pneumex, they make physical therapy equipment. They have recently designed a special program for scoliosis, it involves unweighting the spine and then exercising. Many physical therapists around the country claim that they have witnessed the success of the system over the past 2 or 3 years.

        I'm writing this to you because very few people seem to know about this treatment, but the greatest success has been with small curves in young people like your daughter. Depending on where you live you might want to investigate the possibility of having her try out this treatment. I also developed scoliosis when I was young and the curve really progressed despite bracing, and I'm now having to consider surgery at age 28... I really wish I had been able to try Pneumex had been around when I was at the early stages!

        The website is: www.Pneumex.com

        Good luck.
        Laura

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