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Thread: My sweet 8 yr old daughter is about to get her first brace

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  1. #1
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104

    My sweet 8 yr old daughter is about to get her first brace

    I am heartbroken and wonder how other moms have survived this?

    My daughter inherited Scoliosis from me. It is disrupting her life at a much younger age than mine did. Clearly she has a long road ahead of her, we both do. She currently has a two 27 degree curves in an S shape. She is very flexible and athletic and has been prescribed a TLSO to be worn 18 hours a day.

    My scoliosis was diagnosed when I was 13 and I wore a Milwaukee brace for 3 years full time and have horrible memories of it.

    I am usually a strong person but currently I feel like I am living a horrible nightmare. I'd appreciate any advice from parents who have "been there."

    Thanks,
    Resilience

  2. #2
    Join Date
    May 2009
    Posts
    3,745
    hi resilience
    welcome to the forum...there are many caring, kind people here, with stories & experiences to share, recommendations based on their own difficulties with this condition and related problems...and shoulders to lean on...people of all ages and walks of life...

    i sent you a private message...

    best of luck...
    jess

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Resilience,

    I have 'been there' and my heart goes out to you. You will see from my signature that my son was braced for a few years when he was very young and that he had VBS (stapling) in 2004. Like your daughter, he is very athletic (plays basketball and baseball, his true passion).

    The good news is that there are new breakthroughs in scoliosis treatment all the time -- even juvenile cases, which for a long time did not get the attention that adolescent cases did.

    Hang in there. No matter how strong we are, it's never easy to see our babies go through something like this.

    Feel free to e-mail me any time.

    Hugs,
    Last edited by mariaf; 11-07-2010 at 08:39 AM.
    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/

  4. #4
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Thank you. I will.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  5. #5
    Join Date
    Aug 2007
    Posts
    388
    Resilience,

    Your "name" says it all - that is how you all will get through this. I empathize with your heartbreak - I was there 3 years ago (see my signature below). I noticed the time you posted this message which makes me guess that you are having trouble sleeping because of what is happening to your daughter. (I never pulled an "all nighter" while studying in college...it wasn't until my daughter was diagnosed with scoliosis that i spent the entire night awake trying to find all the information on it that I could; i couldn't sleep anyway so i thought i'd be productive). For me it was like the 7 stages of grief (shock and denial/pain & guilt/anger, sorrow - mostly sorrow). I can't say that I'm totally at acceptance, but things are definitely way way better!

    How much does your daughter know so far? My daughter was almost 7 when she was diagnosed and I was heartbroken because i knew she had such a long road ahead of her but also because i couldn't even begin to imagine how i was going to convey the whole concept of bracing to her.

    I broke it to her in bits and pieces. She knew she'd be wearing a brace...a few months later she asked for how long. I told her that the doctors would tell us that (but that we were next going to the doctor in 5 months) , then as she asked more sophisticated questions she got more detailed answers (eventually i told her she'd be wearing it as long as she would be growing so it would be for a while and as she got older she came to the conclusion that it will probably be at least until she is 15 or so...but it took her a couple years to get there and by then she had adjusted to life in the brace).

    I had a friend who wore a Milwaukee brace like you did. The brace was awful - like a torture device (albeit a needed device). I believe the TLSOs are so much better than what you had to wear so hopefullyit won't be as hard for your daughter. Also, since she "only" has to wear it 18 hours (I know, 18 hours is a lot, but its better than 23 hours) it gives her a good 6 hours for her activities. The downside is that it doesn't give her enough out of brace time for both school and whatever physical activities she does after so she'd probably have to wear it to school to free out of brace time for whatever athletic activities she is in. You will quickly find out the best way to manage that out of brace time.

    I know every child is different, but the cosmetic aspect of wearing a brace didn't bother my daughter at first (it is starting to now that she is getting older and it will only get worse, but when she was 8 she still didn't care). Is your daughter in 3rd grade? I think the kids at school are still very accepting then. With my daughter I came in to the school with her when she first got the brace and the teacher arranged for a Q&A session with her classmates. That way EVERYONE knew what it was for, that she was still the same girl, that it wasn't contagious, etc. The kids were curious and enthusiastic and I felt so relieved after that. (I realize we'll have a new set of challenges when she hits middle school where there will be a large new group of children who don't know about my daughter's scoliosis-but one day at a time, right?)

    Finally, as Maria stated, there are beginning to be more options for scoliosis treatment. If a TLSO doesn't work for your daughter (physically or emotionally) there may be other options - it's good to know there are options other than 22 hours in a milwaukee brace. There's lots of info on these boards and elsewhere. Good Luck! Let us know how its all going.
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  6. #6
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Jill,

    Thanks for your support and words of encouragement. I am trying to be resilient, although this is one of the most difficult challenges I have ever had. That said, I believe that life is 10% what happens to you and 90% how you handle it. Our goal as a family is for this to not define who she is, just be part of it, and for her to reach skeletal maturity with her confidence intact.

    How much does my daughter know? She knows that we'll be picking up her brace sometime this week, then the follow up apts before Thanksgiving, the wean in period, and then the plan for routine follow ups every 3 months which will guide the route from there. I was honest but didn't feel the need to discuss all of the if this then that options in detail. We don't know, and she would worry about the unknown.

    Thanks, also for your insight in addressing my daughter's class. I'll do that on Wednesday and I'm nervous about it. (I want to be strong but fear that I will cry.) It's good to hear that you felt better after addressing your child's class.

    Thanks so much for the support. I truly appreciate it.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

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