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2yr old with brace

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  • 2yr old with brace

    This is my first time posting. My son was born with scoliosis among many other problems. They have been just watching his spine and last week he began wearing a boston brace. He should be wearing it for 23 hours a day but we are having problems making him wear it. I feel so bad for him, I just cry all the time. He has been through so much so far. They say he should be able to do his normal activites but he is having alot of trouble. He has one leg shorter than the other and if he falls down he can't get up by himself. He can't get on the couch or kitchen chairs. He says it hurts to sit. I hate this. Every thing else he has is "fixable". He needs to wear it for the next five to ten years!! That is his Whole child hood practically. I am having such a hard time dealing with this for some reason.
    Any advice to get through this would be appreciated.

    Thanks in advance,
    Michele mom to 2 1/2 yr Nathan

  • #2
    Hi Michelle

    I see you live in Utah - I do too! PLEASE email me. I would love to get more information from you about Nathan, and give you our TLSO brace wearing experiences. Try to take this one step at a time - don't try to do it all at once. I'm anxious to hear about Nathan's other issues - he sounds like an adorable kid!

    boulderfam@hotmail.com

    Hope to hear from you soon!

    Carmell
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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    • #3
      wearing the brace

      Hi Michelle,
      I was just checking out this site and saw your post - I had to join right away so I could "talk" to you!
      I can really relate to what you were saying about Nathan not wanting to wear the brace. My son Nicky is also 21/2 and has had his brace since he was 10 months old. He was O.K. with it when he was little(or maybe it's just because he couldn't talk back lol.), but when he got a little older he started to get sick alot and had his brace on and off all the time. I think that because of this, he never got used to it properly, and now he HATES it. He screams, cries and kicks when I try to put it on him and when it is on he complains about it constantly. It drives me crazy - I feel so bad for him, and I too have spent alot of time crying about "hurting" him. I guess the best advice that I can give you is to just keep trying, and try to always remember that you are doing the best thing for him. It's so hard when they are small and don't understand that it's for their own good! Also, Nicky is very lazy when he has his brace on so I sometimes thought that he couldn't do certain things with it on, but if he really wants to do something he will always figure out a way!!
      I know it's very hard on you and Nathan, but he will get used to it. Try not to let it get you down, and keep up the good work!
      What is Nathan's curve at? If you want to "talk" some more, you can either post a message, or you can e-mail me at cathybartsch@shaw.ca
      Hope to hear from you soon!
      Cathy (Nicky's Mom)

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      • #4
        Thanks Cathy for your reply. It has gotten alot easier. He is tolerating it much better now and alot better than I would have.
        He just had tethered cord surgery on Monday so he is not wearing it now. But when he can again I think he will have to go through the adjustment and getting used to it again. His curve is at a 35. I am hoping it will hold at that or even improve now that is tehred cord is fixed. Thanks so much for you words of encourgment. It helps to know we are not alone. I just wish they did not have to go through this....
        Thanks
        Michele and Nathan

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        • #5
          Michele

          Hi Michele,
          Sorry for spelling your name wrong in my last post! I'm really happy to hear that Nathan was doing better with the brace before his surgery, and hopefuly when he starts wearing it again it won't be quite so traumatic. I hope his surgery went well, and I hope that the brace will keep his curve under control. It's strange, but most of the time it seems like these little guys are stronger than their parents! I will be thinking about you both and hoping for a great outcome. If you ever want to talk/vent, please feel free to e-mail me or post a message!
          Take care,
          Cathy (Nicky's Mom)

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          • #6
            Michelle - I hope Nathan recovers well from his TC surgery. I also hope it helps stabilize his curve. Good luck and let us know how things are going.
            Carmell
            mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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            • #7
              bailey 9mo.

              I found the curve on my daughters spine at 6 mo. the doctors kept telling me it was the way she was sitting, I knew different. I demanded x-rays and she has severe scoliosis. She is 9mo. now and when she is 1 she will have more x-rays and a brace will be given to her. I need help. What are the most comfortable, painless kinds, which are the worst? I know very little and I am trying my best to be informed before my next visit.

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