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Questions regarding puberty and Scoliosis

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  • Questions regarding puberty and Scoliosis

    Hi everyone! I know it's been a long time since I last posted, we have been through a lot in the last 5 months with my separation.

    We went to see Dr. Rivard yesterday and Halle's curve went up to 14 degrees in her brace from 8 degrees in the brace in October. He says he is hoping that she can hold out around 14 degrees through puberty but we aren't sure what to expect.

    I believe that she is on the onset of puberty, as I am noticing some slight changes in her, even though she is only 9 1/2 years old. Did any of you have a child that's curve went out of control during puberty while in the brace? Should I be worried that from October it went from 8 degrees to 14 degrees?

    The day she got the brace on she measured at 32 degrees (without the brace) and 9 degrees (when they put it on her)... so I don't know what her curve is right now WITHOUT the brace but I am hoping it's not worse than 32 degrees now because of the fact that it's now 14 degrees (in the brace). Not sure if that sounds confusing or not... but I am a little stressed since the appointment, I was going there expecting him to say she was now 6 degrees or something.

    I am also worried about when she gets her menstrual cycle and wearing the spinecor brace.. having to wear a bodysuit with snaps at the crotch might make things a little difficult... any suggestions would be great.

    Thanks for taking the time to read and I appreciate any advice or response.

    Marlowe
    Marlowe mom to Halle (age 11)
    Diagnosed January 11/08
    In Spinecor Brace for 2 1/2 years

    In the Cheneau Brace for 10 months
    Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

    Surgery Scheduled at Sick Kids for May 16, 2011


    http://hallesscoliosis.blogspot.com/

  • #2
    Sorry to hear you have been going through a difficult time.

    I don't think that the increase in the in brace curve necessarily means that the out of brace curve has gotten worse. During our first few months in the brace Emily's in brace curve increased. I was extremely upset. Thankfully, at the next visit, the curve reduced again.

    Also, I haven't exactly followed the xray protocol, I did get an out of brace xray at 1 year. It showed that the curve was stable at about 23 degrees out of brace. While I was disappointed that there wasn't real improvement, at least it was stable.

    Spinecor does suggest that it takes from 18-24 months to see improvement or to retrain the back muscles. So I'm hoping that the next time I do an out of brace xray, it will be improved.

    Instead of using the Spinecor bodysuits, we have been using long tight fitting t shirts under the brace. Emily really likes them. The best ones we have found are from a store named Wet Seal. I'm not sure if you have them in Toronto, but I have seen similar ones at JCPenney.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

    Comment


    • #3
      Katelyn

      hey, im 13 years old and of course at a part of puberty in my life. when i wasnt going through perburty i barley had a curve, actually no one was looking at my brace because there wasn't a big curve at all. then when i hit puberty my curve in my back just when from 1 to like 6 then to 17 and now 30 and me in the brace. i think thats why the brace is only needed to be worn until you are fully grown becuse during your growing period that is when your spine tends to stray from the natural path. i hope that you have luck, i do not have any advice for when you are in the brace and it progresses becuase that has yet to happen to me, GOOD LUCK!!!

      Cat Eyes
      Katelyn
      13 8th
      30 degree
      5 degree in brace
      Boston Brace
      Katelyn Caralle
      14 9th grade
      Curve out of brace:decreased to 15
      Curve in brace: 0
      Boston Brace

      Comment


      • #4
        Hi, I'm 20 years old and I found out about my scoliosis when I was about 13 and going through puberty, but the doctor I went to had the "wait and see" attitude, so as I waited it got much worse, I could feel that it was worse and I felt a little helpless, I mean waiting to get worse doesn't seem as smart as bracing the curve where it's at right then and there. Anyway, I finally got braced when my mom took control and sought out her own help cuz the doctor was a little to passive. So I guess what I'm trying to say that you are such a great mom for taking control and bracing your kid when you found out about the scoliosis, it will probably get worse with puberty, but I can't see anything bad with staying in the brace throughout puberty. Hope that helps!

        Comment


        • #5
          Welcome to the roller coaster!

          For me its always a roller coaster ride. I worry about it all the time(obsess says my husband!). Has she grown? I am assuming he checked that at her appt and adjusted the straps as needed. Remember the +/-4 degrees margin of error - you are pretty close and still very low! 32 down to 14 is still GREAT! So words of encouragement, you are doing everything you can!

          We started bracing very late. Our daughter was 1.5 years past the start of her period. Her curve continued to change thru those 1.5 years - even though she didn't really grow! We have not had an out of brace xray but going in April (so I am starting my pre-appt panic already!). Since she is not growing, we have not seen a change while braced - except the very first time. We keep telling ourselves, and her...as long as we stay under 30 we have succeeded!

          She has the adult bottoms, so I can't comment on how to use the body suit during that time of the month..the whole thing is not fun for them. I am constantly amazed at how well my daughter handles this.
          Haley's Mom
          Diagnosed June 2007, Age 11 - NO BASELINE (TOLD TO WAIT)
          Jan 2008 Age 12 - T24 (TOLD TO WAIT UGHH!)
          Apr 2008 Age 12.5 - T30 Riser 4
          Apr 2008 SpineCor in brace T19
          May 2008 in brace T24
          Oct 2008 Age 13 - T23! Still Riser 4
          Jan 2009 T23.

          Comment

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