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Thread: Rigo-Cheneau update for G

  1. #31
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161

    Great news

    Hi mamandcrm,

    I have thought of you and G many times over the last several years. She and Leah are really very similar in age as I recall, and both were diagnosed at a similar age. I am thrilled to hear how well G is doing. You and she are so very lucky that she tolerates bracing so well. Great news all around.

    Leah is 12.5 years old now, and also post-menarchal. She is now 4 years post-VBS and her thoracic curve (which measured 30 at age 8) has been holding steady in the mid-teens since her surgery. Her last measurement in May was 14 degrees. A very different path from G, but how wonderful that they both have achieved a great result as they approach the end of their growth.

    I know you decided to leave the forum several years ago, and you mention in your post that you will not post again, but I am glad that you are able to share G's results over time. As you know early onset scoliosis/JIS is a very lonely road for parents, and there are just not a lot of these young kids out there struggling with scoliosis from such a young age. It has been invaluable for me to connect with other parents in a similar situation. I am really glad you decided to post an update.

    Take care,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  2. #32
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by leahdragonfly View Post
    A very different path from G, but how wonderful that they both have achieved a great result as they approach the end of their growth.
    Both these testimonials ahould give hope for parents of kids with JIS. It's so important that other parents know this given how relatively rare JIS is compared to AIS as Gayle stated.
    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."

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