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Thread: Just got brace for 5 y.o./NEED HELP

  1. #1
    Join Date
    Jan 2008
    Posts
    6

    Just got brace for 5 y.o./NEED HELP

    Hi there,

    I'm pretty new to the forum, but love the support. My 5yo was diagnosed with a 49 upper & 40 lower degree curves about 5 months ago. She got her first brace last Friday and is adjusting well. The dr. said it is similar to a boston brace, but is considered a costum brace. She's having trouble getting on & off the potty and sitting on it seems painful. Any ideas to help us, especially at school?

    Thanks
    Laura
    mom to Tori, 5y.o., 49 & 40 degree curves in mid to lower back
    mom to Will, 2 y.o., straight back

  2. #2
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22
    Welcome to the forum! There is a lot of great support here. Jasmine, my 8 year old was diagnosed at 1, and has been wearing a boston brace since. Getting on & off the potty-is her brace getting stuck on the edge of the seat? Maybe a step stool would help so she'd be just that little bit higher. As for school, Jasmine's teacher makes special considerations for her, especially if everyone is supposed to be sitting on their pockets. Sometimes Jasmine will be allowed to sit in a chair in the back, other times she just sits on her knees and moves around as needed. As for sitting in a chair for a long time, I think that just gets better over time, by learning to sit and move around a little to take the pressure off when needed. Unless it's still a bit too long in the front and cuts off the circulation to her legs (that's happened to Jas too) Are you close enough to your Dr to be able to go back and have adjustments made? We're lucky enough to live 20 minutes away from the Salt Lake City Shriners, and so just made appointments with the prosthetic/orthotics department to have the adjustments made. Hope this helps a little! Good luck!

  3. #3
    Join Date
    Feb 2009
    Posts
    3

    My dayghter is 9 years old with scoliosis brace

    She got her brace about 2 months ago and she gets very itchy sometimes and the brace keeps moving up on her it dosen't stay were she needs it has anyone had this problem?

  4. #4
    Join Date
    Oct 2008
    Posts
    299
    Re: brace riding up, sounds like it is either too long, or not tight enough--you need to get it looked at by your orthotist. The itch (I've recently learned) may be heat rash. Benedryl and cortisone spray helps a lot, and at least rinsing the torso every day to keep the pores clear. If it's a constant problem may be a true allergy to whatever shirt she is wearing.
    Last edited by mamandcrm; 02-07-2009 at 08:27 PM.
    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

  5. #5
    Join Date
    Feb 2009
    Posts
    3

    9 year old with 47 up and 27 lower

    Is there a suport group in the boston mass area for kids with scoliosis ?

  6. #6
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22

    a couple of things might help

    To help with getting on and off the toilet we got Jas a step stool which helped her a lot. With Jasmine's first few braces we also had to fight tooth and nail with them to give her a bit more leg room when she sat down. Her legs would turn blue! So you might want to go back and see if you can get them to trim it even just 1/4 an inch might make all the difference. As far as school goes Jasmine has a patio furniture seat cushion on her chair for school which helps when she has to sit for long times. Her teacher also made special considerations for her when all the other kids are sitting on the floor Jasmine can get a chair if she needs one but she likes to try sitting on the floor as long as she can first. As far as itching goes after trial and error we figured out Jas is allergic to all laundry detergents except Tide (weird I know) but as soon as I washed all of her stuff she hasn't had any problems since. Just a thought, another possibility to look at.

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by SARAHR1999 View Post
    Is there a suport group in the boston mass area for kids with scoliosis ?
    Sarah,

    I'm not sure if they have a support group or not, but I would try contacting someone at Boston Children's Hospital (not sure where your daughter is being treated now). But at BCH I know they treat lots of kids with scoliosis (of all ages, not just teens) - so if they don't have a support group, they might know where you can find one in the area - or at least could maybe put you in contact with other families dealing with scoliosis in a younger child.

    Good luck,
    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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