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Thread: Need help for my daughter please

  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
    6,802
    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
    8,903
    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
    1,162
    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 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

  7. #7
    Join Date
    Jun 2010
    Posts
    23
    I actually looked it up, sounds very interesting.
    Though one problee, we live in Canada and I do not think they do this here. We go see her speacialist this Thursday for in brace x-rays. I will ask him about this.
    My husband is really interested due to he himself having scoliosis as an 11 yr old and wearing Milkwauki brace for 3yrs and then getting spinal fusion done.
    Does anyone know of any Canadians getting this done either here in CAnada or in the USA?
    Thanks so much for your input and glad your daughter is doing well.

  8. #8
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    On the VBS forum we have one family from Canada whose doctor is going to start doing VBS soon. If you come onto the forum we can help you find that info.

    Also, Canadians qualify for care at Shriners Hospitals for Children, where state-of-the-art scoliosis care is entirely free of charge, regardless of ability to pay. It truly is an amazing organization. We traveled 2000 miles from Oregon to St Louis, MO for our daughter's surgery. VBS is also being done now at Shriners Chicago and Shriners Houston. VBS was originally invented at Shriners Philly where it is still done, although the waiting list is so long that if it were me traveling for it, I would look to the other Shriners hospitals that are doing VBS.

    I understand your husband's interest as a formerly braced child--I was also braced at age 13-14 and I hated it. The thought of bracing a child from age 7 for ~8-9 years, followed by near-certain surgery just did not work for our family.

    Take care, and feel free to send me a PM if you would like more info about what the surgery and recovery entail.
    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

  9. #9
    Join Date
    Jun 2010
    Posts
    23
    Thanks so much.
    Though I am having some trouble getting onto the forum, just waiting for confirmation or something they have to e-mail me so that I may go onto the forum.
    DO you know where in Canada this docotr is?

  10. #10
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi,

    Sorry to be a day or so late chiming in (thanks Gayle for sharing that information on VBS and our website).

    Mommycat - have you tried registering for www.vertebralstapling.com? I co-moderate that site and wanted to let you know that after a very brief screening process you should have no trouble accessing it.

    There is one child, as Gayle mentioned, who lives in Canada and is awaiting VBS. The doctor's name escapes me at the moment but I would strongly encourage you to join the VBS site to talk to other parents and hopefully you can connect with that other parent in Canada and other parents of children who have undergone VBS as well.

    Also, I know of children from Canada who have been seen here at Shriners as well, although I'm not sure if any have actually had VBS surgery in the U.S.

    I look forward to getting to know your family and assisting in any way I can.
    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/

  11. #11
    Join Date
    Jun 2010
    Posts
    23
    Thanks, I just recieved an e-mail, to e-mail either Amanda, Cara or Maria to do a screening. So now I believe I wait for the screening???
    I quickly gave a brief history in my e-mail.

  12. #12
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    I will look forward to seeing you soon on the VBS forum. In the meanwhile, there are links to general info and some articles. Once you are all signed up I hope you will post there. There are a lot of wonderful families there who have experience with VBS, as well as plenty who have lots of experience with bracing, too.

    Take care,

    Gayle
    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

  13. #13
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by mommycat View Post
    Thanks, I just recieved an e-mail, to e-mail either Amanda, Cara or Maria to do a screening. So now I believe I wait for the screening???
    I quickly gave a brief history in my e-mail.
    Hi Mommycat,

    Yes, we did receive your request to join the forum. Please just follow the instructions in the reply your received (which basically just asks you to register and tell us the user name you registered with so that we can approve your membership) and that's all there is to it

    Again, we look forward to seeing you over on the VBS site (as well as here)!
    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/

  14. #14
    Join Date
    Jun 2010
    Posts
    23
    well I e-mailed I believe it was Maria and told briefly about my daughter and that I wanted to do the screening, but have not yet heard back from her about this. So when I go to the forum and put my user name and password in it does not work. Hmmm perhaps I did something wrong.

  15. #15
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi Mommycat,

    I am sure your login and password will be activated soon. Sometimes it takes a day or two, since Maria has 3 kids AND devotes so much time to helping other scoli families. I will look forward to your posting there soon.
    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

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