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Just got Boston Brace-3 YO

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  • Just got Boston Brace-3 YO

    Hi all-

    So happy to have found this forum!

    My son is 3 and has a 31 degree curve. He has an extensive medical history (cancer survivor) but no one seems to be able to tell me any reason for the scoliosis...

    ANYWAY we just started with our brace yesterday. He wore it all night without any complaints--we were amazed! He will be in it for 16 hrs a day.

    Would love to hear from anyone about what life is like with a little guy and bracing. My son is VERY active...how will life be wearing the brace during waking ours?

    Thanks to everyone for your support!
    Stacey

  • #2
    Hi Stacey

    Welcome :-)

    A thinking out loud moment (where I write what I'm thinking), Did they diagnose it as idiopathic or congenital?, In the scoliosis diagnosis, did they check your little guy out for all the possibilities of congenital scoliosis; such as extra vertebrae, extra rib, hemi vertebrae; and go through all the MRI's, check of kidney function (there's more but I can't think of what they are)

    Well done to your little guy (and you) for getting through the night without any major dramas or problems. As my Mum (and most mums out there) would say, its amazing how resilent kids are, that whatever gets thrown at them in life, they can adapt to it pretty quickly and soon see it as the most normal thing in the world.

    You'll have probably noticed by now, that I'm nor a mum, nor a guy :-), but I did wear the brace growing up. What's it like wearing a brace, being a little kid, and being active all rolled into one..........With lots of support, and encouragement and a belief that you can do anything you can put your mind to, a brace will simply be a "second skin", not a limiter in any way to being a "normal" child, and getting into all the rough and tumble stuff (and messy stuff) that you get into as a kid.

    If you can't do it they way you used to do before, you quickly work out a way to do it, just a little differently to what you were used to. If I told my mum "no, can't do it", she'd just wait, and pretty soon, I'd have worked it out for myself.

    I think the hardest thing, with having a child in a brace (for the parents) is other people's/ parents reactions. You see your child as normal (just wearing a brace) but other people will often say "oh poor you, your child's in a brace", or "how ever do you cope". We would (mum's told me on many occassions) get lots of stares when were down the park and stuff; cause I'd be tearing it up on the playground, or hanging upside down on the monkey-bars, brace in full view; and Mum didn't mind it in the slightest, as long as I was happy. She never prevented me from doing anything I wanted to do.

    An important thing is to keep the singlet (undershirt) under the brace from getting too hot and sweaty. As when it gets really wet from all the sweat and stuff, its pretty uncomfortable, and its when you start to get rashes/irritations under the skin. You may find during summer, that you may have to change the singlet a couple of times during the day.

    I was in the darned brace for 23 out of 24 hours a day (7 and a bit years straight whew). My parents attitude (support but not sympathy) was instrumental to my compliance, and my belief "that anything was possible as long as I put my mind too it". I saw it as my "really cool body" (it had stickers all over it) and happily showed it to people at every oppurtunity. And how do I remember my childhood......no diffrent to any other child......completely normal....full of lots of fun.....mess....scrapes........and laughs.

    My very best wishes as you and your son commence this "journey" :-)

    Alison

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    • #3
      Hi Alison!

      Thanks SO much for your reply!

      My son had a rare form of liver cancer dx at 8 months of age; he had extensive abdomindal surgery, leaving behind lots of clips, and adhesions; he also had a thorocotomy. AND he also had rapid growth due to his cancer. It is believed that all of this may be the reason behind the scoliosis. However, congential had been brought up to us, but never examined. I think it is an important point to raise--glad you brought it to my attention.

      Ryan continues to tolerate the brace well; he is up to 13 hours. He needs to get to 16. We need to know if we can break up wear time or if it needs to be continuous. He runs around and also sleeps well in it! Amazing!

      We are getting a corection to 12 degress in the brace. Without the brace he is at 32 degrees. Dr was pleased. I assume this is good!

      Thanks again for your support!!!
      Stacey

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