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Thread: To Dixie

  1. #1
    Join Date
    Oct 2003

    To Dixie

    Hi Dixie (I started a new thread because the other one was getting a little long... hope you don't mind)

    I have 2 children with scoliosis - a 17yr old daughter with adolescent idiopathic scoliosis, and an 8yr old son with severe congenital scoliosis. I also have a 10yr old nephew who has Down Syndrome. Reading your post, I can somewhat understand the flexibility issues with your daughter. I think you are absolutely right in not rushing into surgery. If her curve is as flexible as you indicated, I'd certainly be looking for other ways to address the scoliosis.

    I'd be getting another opinion from a pediatric orthopedist who specializes in children with Down Syndrome. There has to be a few out there. Does she see docs for checkups through a clinic setting? If so, they could recommend someone to you. Or, if she hasn't had checkups, I'd contact your children's hospital and ask for a consultation with a ped. ortho. who would understand the complexity of your daughter's case. Scoliosis is nothing to be taken lightly. Surgery should NEVER be done in haste.

    I'd be writing down questions that are specific to her - things like "would bracing be an option, since her bone structure seems to be so flexible?", "how does the hypotonia influence scoliosis?", etc.

    Did the MRI show any problems? I'm assuming not since you didn't mention anything about the results. Did they ever resolve the abdominal pain?

    My gut impression here is to find an orthopedist who will monitor her every 4-6 months, watch her closely. You, the parent, need to have a full understanding of what's going on. This ortho sounds like he's got quite the ego trip - if he's very comfortable "not" giving you details. Not good. There are several websites you can go to to find orthos in your area. Many even have email contacts. Maybe you could write to them and ask if they would consider consulting on your daughter's case. Another question that usually gets the docs attention is, "what would you do if this were YOUR child?". Sometimes you get totally different answers...

    Good luck and keep us posted!
    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.

  2. #2
    Join Date
    Jan 2004
    Perth, Western Australia
    Hi Dixie

    As your daughter already does yoga I thought you might be interested in the following website

    I don't know if it is any good, as I know nothing about yoga


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