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  1. #1
    Join Date
    Feb 2012

    New Here with Recently Diagnosed Toddler

    Hi all!!! My name is Andi and my 22 month old daughter, Odella, was diagnosed with congenital scoliosis in October. We were at her peds for her 18month well baby visit and I asked him to take a look at her back because I thought her spine looked curved. He agreed and sent us for xrays. The xrays came back showing a hemivertibrae at t5 and one at t9 (both in the same direction). She has ribs fused at t4-t5 and is missing a rib at t9. Her curve was measured at 30 degrees (left thoracic) from the superior endplate of t4 to the inferior endplate of t11. She also has a minimal right compensatory lumbar curve.

    So hearing all of that freaked me out! We then had an appointment with an orthopeadic surgeon in November. He was awful (in my humble opinion). I am of the opinion that while you may be physically treating the child, you must also treat the parents, especially when the patient is so young and this man did nothing to make me at ease or feel okay about the situation. He basically told us to come back in one year. I then suggested that if I saw any change or felt something was different that I would make an appointment sooner and he said "no". He did send Odella for a renal ultrasound though and it was fairly benign with no real issues (unless debris in the bladder of an 18 month old is a problem--which I was told was not). They did no checks of her heart, he said that if her ped didn't hear anything on any of her check-ups, it wasn't necessary.

    I was left very unsatisfied with all of this so I am getting her a second opinion. We go on Monday to a new doctor.

    I am here to get any thoughts and opinions from those of you with any experience at all.


  2. #2
    Join Date
    Feb 2012


    Here is her xray
    Attached Images Attached Images

  3. #3
    Join Date
    Jan 2008

    go to Shriner's Hospital

    Hi Andi,

    I am really sorry to hear about your daughter's diagnosis--I am sure this is quite a shock and you must have a lot of questions. I think it is terrible how you were treated by the first specialist, and you deserve better. I don't know where you live, but I would strongly suggest you apply to be seen at Shriner's Hospital. Shriner's is a network of about 18 specialty orthopedic hospitals that provide cutting edge treatment free of charge to all children, regardless of ability to pay or insurance status. The only criteria is that the child has a condition that will benefit from specialized orthopedic care, and scoliosis is on the list of those conditions. You do not need to be sponsored by a Shrine Temple or know anyone who is a Shriner.

    Shriner's Philadelphia and Shriner's St Louis have particular expertise with treating young children with scoliosis, but there are other hospitals ll over the country. You can find a list of hospital locations at the following link: . You can print out the simple application there, also.

    If your daughter was my child I would push the pediatrician for an echocardiogram of her heart as well. You may have to politely insist, but it is your right to do so.

    Best of luck, and please do let us know how things are going for you and your daughter.
    Last edited by leahdragonfly; 03-01-2012 at 10:10 AM.
    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

  4. #4
    Join Date
    Sep 2003
    Northern California
    Hi Andi...

    Where are you located?

    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  5. #5
    Join Date
    Feb 2012
    Gayle--Thank you. I have been thinking about Shriners as I have seen so many positive stories about them. We will see how Monday goes and go from there. I think one of my first questions to this new doc that we are seeing will be how many patients with hemi's has he seen since it seems to be sort of rare.

    Linda--We are in the triangle area of North Carolina.


  6. #6
    Join Date
    Aug 2004


    Hi Andi,

    First of all, please know I am sending you a big cyber hug!

    My own son was diagnosed very young and to this day I wish I had found Shriners sooner!!! I cannot reiterate strongly enough what Gayle said. There is a HUGE difference between a doctor who specializes in scoliosis - and a doctor who specializes in INFANTILE AND JUVENILE scoliosis. At Shriners in Philadelphia, where my son goes and which is probably the closest to you, they have an entire team, led by Dr. Betz (one of the best in the country, perhaps the world), who sees tons of very young children with scoliosis. Patients are referred there from all around the country, including some of the more challenging cases to treat. We live in NYC and are fortunate enough to have medical insurance, but even though the so-called 'top doctors' are supposed to be in places like NY, for treatment of scoliosis in a young child, Shriners is the place to go.

    Please look at my signature for a little more info on my son and also for the contact information for Shriners in Philadelphia. The contact person - Janet Cerrone, the PA to the entire spine team there, knows more about scoliosis than some doctors and is extremely nice and easy to deal with. Parents love her - and I can personally guarantee you that in addition to treating the child/patient, they treat the entire family - in fact that is their philosophy 'family centered care'. A phone call or e-mail to Janet, if you decide to go this route, will save time and start the ball rolling even before you submit the application.

    Sorry if I sound like a walking ad for them but my son has benefitted from almost 8 years of the very best care from them, which amazingly has not cost us a penny.

    Please feel free to e-mail me if you like (e-mail address is also in my signature).

    Best of luck to you and please keep us posted.
    Last edited by mariaf; 03-02-2012 at 08:02 AM.
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

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