Results 1 to 15 of 18

Thread: Need help for my daughter please

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Jun 2010
    Posts
    23

    Need help for my daughter please

    Hi
    My 7 yr old daughter was diagnosed with Scoliosis a couple mths back . She has a double curve. Top one was 28 degrees and lower one was 19 degrees.
    She has been in a Boston brace for just over a mth now and is wearing it 22-23 hrs a day now.
    Latley she has been having troubles and issues with sitting in the car for more than 30 minutes in it . She says its uncomfortaable and really hurts and needs to either stand or take it off.
    Had a real rough go of it sitting in the theater to watch a movie last night as well. Not sure if this is normal or not. Did any of you who wear a brace have the same issue? If so is there anyway to help her out to get comfy, since there are going to be alot of car rides and even the theater in her future with her brace, whome she calls "Cleo".
    She is very active as a 7yr old should be but just now seems to be getting down about having scoliosis and wearing the brace, otherwise she has been quite positive about it all.
    Her father also had scoliosis as a child, though he was 11yrs when they found it. He wore a brace for 2-3 yrs then ended up having surgery.
    Really hoping for a better outcome for her. Seven is so young and I forsee many years in the brace.
    Please any help on this issue would be muchly appreciated.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,793
    Quote Originally Posted by mommycat View Post
    Hi
    My 7 yr old daughter was diagnosed with Scoliosis a couple mths back . She has a double curve. Top one was 28 degrees and lower one was 19 degrees.
    She has been in a Boston brace for just over a mth now and is wearing it 22-23 hrs a day now.
    Latley she has been having troubles and issues with sitting in the car for more than 30 minutes in it . She says its uncomfortaable and really hurts and needs to either stand or take it off.
    Had a real rough go of it sitting in the theater to watch a movie last night as well. Not sure if this is normal or not. Did any of you who wear a brace have the same issue? If so is there anyway to help her out to get comfy, since there are going to be alot of car rides and even the theater in her future with her brace, whome she calls "Cleo".
    She is very active as a 7yr old should be but just now seems to be getting down about having scoliosis and wearing the brace, otherwise she has been quite positive about it all.
    Her father also had scoliosis as a child, though he was 11yrs when they found it. He wore a brace for 2-3 yrs then ended up having surgery.
    Really hoping for a better outcome for her. Seven is so young and I forsee many years in the brace.
    Please any help on this issue would be muchly appreciated.
    Hi...

    It sounds like the brace might need to be adjusted. You should call the orthotist and tell them about the problem.

    By the way, I moved your thread from the kids forum to the parents forum.

    --Linda

  3. #3
    Join Date
    Jun 2010
    Posts
    23
    thanks, I just thought more kids may have experienced this issue and have a few answers or tips.

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    I think I recall a testimonial about the brace being too long and cutting into the top of the thighs when seated. They just shaved off some of the bottom and that solved the problem.

    Also, maybe Maria will comment but I think you are still in VBS range. You may want to investigate that instead of bracing.

    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."

  5. #5
    Join Date
    Jun 2010
    Posts
    23
    It actually does not hurt her by her leg area, but she says inside. Its not cutting into her legs. Its like she wants or needs to sit perfectly traight. Unfortunalty theater seats and car seats are not like that.
    By the way I am not familar with VBS.

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi there,

    Welcome to the forum. I am sorry about your daughter's recent diagnosis--my daughter was diagnosed at age 6 (and is now 8) so I can relate.

    I would agree about getting the brace checked/possibly adjusted by the orthotist. My daughter had similar discomfort with the car--I think it's because of the way the seats are, their knees are bent up farther than normal and it makes the brace feel uncomfortable. My daughter ended up refusing to wear the brace in the car because it was just too uncomfortable.

    Sharon mentioned VBS--vertebral body stapling. It is a surgical alternative to brace wearing for moderate curves (~25-35 degrees) in growing children. My daughter had great difficulty with the brace, and statistically speaking we felt she had no chance of avoiding fusion with brace wear. She had successful VBS surgery in May at Shriners Hospital St Louis. Her curve was 30 degrees pre-op and 18 degrees post-op, and she does not have to wear a brace anymore. The staples basically act as an internal brace. There is a wonderful group of parents whose children have had or are considering VBS at www.vertebralstapling.com. Come visit us, there are a number of other juvenile scoliosis families there.

    Good luck,

    Gayle
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •