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  1. #1
    Join Date
    Dec 2011
    Posts
    3

    Newly Diagnosed 8yo and overwhelmed

    Hello all, my daughter Jillian was dx on Dec 5th with a 47 degree right thorasic curve. It was initially found on a well visit. Her first set of xrays showed the curve and physical exam showed a trunk rotation of 16 degrees. To look at her now, I feel horrified I never picked this up, how could I have missed this?? We were fortunate enough to see Dr Betz at Shriner's hospital yesterday! I can not say enough how wonderful Dr Betz and his team were, especially Janet. Without a doubt, I know Jillian will be well cared for!
    Dr Betz ordered a a new set of xrays and confirmed a right thorasic 48 degree curve and a 28 degree compensitory lumbar curve. Her trunk rotation did increase from 16 to 20 degrees in the matter of 3 weeks??? Dr Betz and Dr Samdani discussed her case right in the room which I thought was wonderful and decided that Jillian would be a perfect candidate for the tethering procedure around age 10. From what I understood, her curve is too advanced right now for the VBS but her spine is very flexible which is good. She was measured for the Boston brace and placed on the surgical waiting list. I pray that this brace controls her curve enough to prevent the tethering. I know I need to be educated on this procedure but only 9 tethering procedures have been performed at this point.
    Has anyone else been in this situation with a young child with a large curve and if so how did your plan of care progress? Any information would truly be appreciated!
    Elaine

  2. #2
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    I don't know much about that process but wanted to reach out as one parent to another to say I'm sorry you & Jilly are going thru this, I'm glad you found the forum as there are some good people w great input - Linda for one should be a huge help. prayers & best wishes for comfort & discernment as you go thru it all.

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Hi. I am sorry about the diagnosis. I was waiting for some parents of kids with JIS to chime in but I don't think any have any experience with tethering.

    There are definitely some JIS kids who have been braced successfully, at least prior to the adolescent growth spurt. It appears far more successful than bracing in AIS just form the testimonials.

    Nobody is better than Betz/Samdani. You are at the pinnacle for JIS as far as I know.

    Good luck.
    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."

  4. #4
    Join Date
    Dec 2011
    Posts
    3
    Thank you all for the feedback..it means a lot!
    Elaine

  5. #5
    Join Date
    Oct 2008
    Posts
    299
    Hi, our daughter was diagnosed at about 7 yo and her curve quickly increased from 25* to 35* despite night-time bracing. We did consider VBS at Shriners but, as you can see from my signature, decided to try full-time bracing (Rigo-Cheneau brace, not Boston brace). It worked very well for her. For the last 2 years about, she has just worn the brace at night again. I do not know anything about tethering but am happy to try to answer any other questions you have if I can. You can PM me. Hang in there
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Elaine,

    Yes, you are right - I can tell you from experience (8 years' worth) that Jillian will be extremely well cared for. I would advise you to try take it one day and a time and see how Jillian responds to bracing. Rest assured that Dr. Betz, Dr. Samdani and the rest of the spine team, one of the best in the country IMHO, will be on top of her progress, good or bad, and offer appropriate alternatives if need be. They never rush anyone into surgery, but rather offer that option only if and when it's the right thing to do in their collective opinion.

    I know it's easier said than done, but try not to think too much about what might be until you see which direction things are going - and maybe see where things stand in, say, 6-12 months. You'll probably have a much better idea about what your options are at that point. In the meantime, hang in there and know we are here for you.

    p.s. I think you've also been on the VBS site - there are a couple of parents there whose children had tethering surgery (one in Philly and one by Dr. Newton in CA, I believe) and so far both children are doing extremely well. That said, I realize it's very scary with something so new, although a lot of the principles are similar to VBS which has been around somewhat longer (10-12 years).

    Best of luck and please keep us posted.
    mariaf305@yahoo.com
    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)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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