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Thread: looking for help

  1. #1
    Join Date
    Jan 2004
    Posts
    3

    looking for help

    I have a daughter that just turned 12, she has idopathic scoliosis with a approximate 30 degree curve. We have met with Orthopedic that recommends a brace, but the two nearest companys that supply them seem to be inexperienced in bracing scoliosis patients. We have contacted the Shriners in Spokane a 5 hour drive and they are out 3 months before we can get an apppointment. With all I've read I don't want to delay that long.

    We also have heard about the clinic in Baton Rouge, but after reading material in this forum I have my doubts.

    Like all parents I would like to do the best and avoid surgery if possible. Any suggestions would be appreciated

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi - I posted on the other message you wrote, asking for details. Then I saw this post... silly me!

    I live in northern Utah. We have a great orthopod at Primary Children's Medical Center. He specializes in scoliosis and related issues. I'd be happy to give you his contact information if you want to consider another opinion. Traveling to get good care for your child is hard, but sometimes necessary. We used to have to go to Texas for my son's back surgeries, but now our ortho here has the approval to complete the surgeries here. Makes traveling much less expensive.

    I think it is very important to have a good doc who will be there for you throughout your daughter's treatment. I have a 17yr old daughter who was diagnosed with idiopathic scoliosis just before her 13th b-day. She currently has a 40 degree lumbar curve with a rotation of her spine - right at the point where we need to decide whether or not to do surgery. Surgery should NEVER be taken lightly. We are waiting to see if her spine stabilizes and how she feels overall. Next checkup will be this spring.

    Good luck and let us know how things are going.
    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/

  3. #3
    Join Date
    Jan 2004
    Location
    California Bay Area
    Posts
    21
    I would make the appt in Spokane just to be safe and still look for something/someone closer and sooner. In the months that my doctors fiddled around with me, my upper curve went from 19 degrees to 24. My lower worsened as well. The sooner you can help support the back, the better.

    Best of luck to you.

    -Michelle

  4. #4
    Join Date
    Jan 2004
    Location
    Phoenix, AZ
    Posts
    37
    Hey Strell, I am 15 years old and, I to have 30 degree scoliosis. When was your daughter diagnosed with scoli? I was last summer. I have thought alot about getting surgery cuz I'm tired of having pain in my lower back. But my mom said not till its neccessary. I have to get a brace but my referral still hasn't gone through since December. Well, better go. Please write back. Maybe I can talk to your daughter?


    Talk to you later.

    Tell your daughter that I'm T.A.H ( thinking about her)!!!
    ***ASHLEY***

  5. #5
    Join Date
    Jan 2004
    Location
    So Calif
    Posts
    30
    Hi,
    You are right to be concerned about waiting for a brace. Your daughter is probably in the period where she is undergoing rapid growth and is at risk for the curve progressing. My daughter's scoliosis was diagnosed just at 11 1/2 years age and her curves were 35/33. We were braced as fast as the orthotist could get the brace made. I wanted to suggest to you to call a company in Mission Viejo Ca called Scope. They have offices around Southern California and have orthotists who know how to make braces for scoliosis. They do a custom casting mold and then use the computer to customize the brace for the child. We have been very happy with the professionalism and expertise at the Mission Viejo office. If you called them they might be able to direct you to someone close to you. Maybe there is some network of orthotists who have special knowledge of scoliosis bracing. Scope has a web site also. http://www.scop.net/index.htm
    I hope that helps. God bless you!
    Kim
    Kim

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