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Thread: A mom who needs advice for her little girl

  1. #1
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    Dec 2006
    Location
    Arkansas
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    A mom who needs advice for her little girl

    Hello everyone,and may I say my heart goes out to each and evryone.My little girl who just turned 12 this month,got her brace yesterday.She has to wear it 23hrs a day!!She is very tiny all of 68lbs and it hurts her,she cant sleep and cries saying she looks like a football player now.I want to take all her pain away but I know I cant do anything but be there for her.I guess im not so much looking for advice as I am looking for some friends who understand how much pain im in for my baby.I need to be a rock and be strong for her she needs me,but I guess im also looking for some people who I can share my fears with,I dont want her to know how scared I am for her.So if theres anyone out there just wanted to talk ill be here.

  2. #2
    Join Date
    Aug 2006
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    369
    Hi My little angel

    You came to the right place. I have received a ton of support from the people on this forum. It is very scarey but as mothers we must be strong. What has helped me personally has been to research and talk to freinds, family and professionals about my daughters scoliosis. Keeping busy and being proactive for me is key. Have you read the threads on the spinecor brace yet?

    Christine

  3. #3
    Join Date
    Dec 2006
    Location
    Arkansas
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    45
    Christine, thank you I read alot about that brace ,I didnt know exactly what that was at first.This is all new to us it came so fast.The school caught it within 3weeks were at the Drs.I started looking into that last night actually.I showed it to her and she begged me to look into it for her.Im wondering why the Doctor never mentioned it.Her curve is at 35 3/4,I cant believe I never noticed it!!!Is that what your child wears?Did she begin with something different?

  4. #4
    Join Date
    Aug 2006
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    369
    My little angel

    I just happen to stumble on the spinecor info. We should talk there is to much to be said to type. Private message me if you want to talk via phone.

    Christine

  5. #5
    Join Date
    Dec 2006
    Posts
    6
    mylittleangel,
    I was born with scoliosis, and had worn a brace from as early as I can remember. I had harrington rod surgery at age of 12/13, and was in a cast for almost a year, from shoulders down to my hips. I symothize with your little girl, It is rough, and I was out of school for almost a full school year which was hard. But I am doing well now. I am 25 years old, married, and 6 months pregnant with our first baby.
    The road was long, and I remember days when all I wanted to do was go ride my bike with friends or play in the tree forts we built, but couldnt because of my back. But I feel as though I am a stronger individual for all that I overcame though, and cant imagine my life any other way. I dont feel as though my childhood was altered or that I missed out on anything that a normal child would, my parents were and are unbelievable, and it sounds as though you are an amazing mother also. Your little angel will be fine, and will be a strong young woman because of it. She may not understand now exactly what she is going through, or feel like " a football player," in her brace, but it will all pass, and you will be amazed at how strong of an individual she will become.
    Good luck, and stay strong for her. My parents never treated me any differently than my younger sister who didnt have scoliosis, and never gave me any special "rides" along the way. I was always treated as another " normal ' child, and I think that is all I needed. Good luck to you, and your little angel.....

  6. #6
    Join Date
    Oct 2005
    Posts
    178
    The pain in the brace at first is to be expected as it is not only from presssure where the brace is pushing against her but muscles that are getting stretched and held into positions that they haven't been in a while. I hope that she is working up to the 23 hrs/day rather than starting right out at the 23 hrs. Most doctors will have the child work up to the full time. This is a tough age to be dealing with this. She, as you say, is very small at a time when many other girls her age are starting to show the physical changes of puberty. This is a time when many girls are self conscious about their bodies and image. She needs to be patient as things will get better. One person wrote of how they actually preferred keeping the brace on as it was more comfortable. It's a shock right now, give her time, she'll eventually come around. Forgive me for butting in on somethng else here. I know she'll always be "your little girl" to some extent until the day you die. The way you refer to her now as your little girl had me thinking that it was a girl of about 6, not a "tweenager". Ask yourself if you are treatiing her as that 6 year old, or the tweenager. Be sympathetic and compassionate, but DON'T baby her. Give her a few weeks to get used to the brace and if things aren't getting better, she may need a re-fit. Hang tough yourself, once she gets over the shock of it you will be amazed at how well she will bounce back. Remember that the brace is not to correct the curve, but to slow, or stop it's progression. Remeber that there still may be the possibility that she will end up needing surgery eventually. When you feel it's the right time, you may want to talk to her about this just so that it's not such a shock if it turns out that she does. Right now though, just give her time to get used to the brace.

  7. #7
    Join Date
    Oct 2005
    Location
    United States
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    35
    my little angel,
    i am currently in a spinecor brace.
    you said in one of your posts above why the doctors didnt say anything about spinecor..
    a main reason doctors dont is because they feel that it doesnt work.
    there are a lot of people who have scoliosis and think that it doesnt work like the hard braces.
    i have been in mine for one year and 3 months.. geez it doesnt seem that long, but my curves have dropped nearly ten degrees.
    i was originally 24 & 17 ish..
    now im am 17&13.
    i dont know what your daughter's curves are.. if they are really high, then maybe this isnt the best for you.
    but i dunno.
    if you would like to talk to a spinecor "bracer" (i dont know what you call it lol) Dr. Brian Oulette is outstanding and would be a lot of help.
    Diagnosed @ age 14 (now 15)

    i HAVE A LOVELY SPINECOR BRACE

    CUrVES* 14&&17 as of 4.22.06 (out of brace)

    ATLANTA, GEORGiA

  8. #8
    Join Date
    Dec 2006
    Location
    Arkansas
    Posts
    45
    Kendra,
    You are a amazing person.Everyone who has or is going through scoli,sound just amazing to me.I remember being preteen/teen it is hard enough without added to it.As the days mgo by and the new wears off,I realize my daughter is stronger and more ok with this than me.I guess as a mom you try to "fix"everything for your babies.You have made me feel so much better though,all I really want for her is a so called normal life,but then I hear you married a baby on the way how much more normal is that.You sound as if you are truley happy I
    wish you the most happiness with your"little angel"on the way.As to have a mother like you is a true blessing.Please keep us posted and let us know when this little angel arrives.

  9. #9
    Join Date
    Dec 2006
    Location
    Arkansas
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    45
    The Slice,
    You are right in a sense she not a baby,I over do it.We are very close and talk about "everything" , to an extent.Im mnot crazy for many years w/ her I was a single teenage mom,who had to grow up fast!!Working 2 jobs and night school.I want her to have it different she is my heart and soul.I am now married with another child as well and can do everthing in my power for my girls.That is why im so protective,not crazy I do realize she is preteen.You are right though as parents we sometimes forget they are not babies anymore.She came to me and asked me to stop being so protective,she is ok.I am making her feel like she is a criple.I was smothering her which is worse.Thank you though sometimes it takes someone on the outside to show you and you did.I know my daughter appreciates it. My daughter came to me and said mom I am who I am,If people are to laugh,they were going to look for something anyway.I ju8st made it easy for them.She is very confident and ok with this,and I believe I was driving her nuts!!By the way you were not rude just honest!! I appreciate that,its why im here in the forums.

  10. #10
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    overprotection did not help me

    I wrote you a private message about my experience as a teen.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  11. #11
    Join Date
    Oct 2005
    Posts
    178
    Mylittle angel, I'm glad to hear that things are going so well. It doesn't surprise me too much that she has bounced right back, kids are so resilient. Try to remember what it was like for you at that age - remember that she will have her ups and downs with the brace and alot of other things (she's at that age). Know that staying close to her and always keeping an open dialogue with her is great. She has to start fending for herself. Although you may mean well, you may sometimes take away from some of the confidence she is building for herself. BTW, be proud of yourself for what you have accomplished. Raising a child as a single parent, and working two jobs is not easy at all. That good, and open relationship with her will do far more to protect her than smothering her with your attention. What she was problably more upset about was the unknown - what the brace would be like, how others would react, etc.

    My niece is an avid rock climber, and now in college. I remember going out to visit their family some time back when she was about ten or eleven. and we had gone to this place where they had done some climbing. She did quite well considering the anchors that were in place were put there by someone who was close to a foot taller than her at the time. I remember that at one point, she got stuck and was even to the point of starting to cry about it. My her parents were great about it. They didn't let her give up right away, nor did they give her step by step instructions, but what they DID do, was to get her back on track mentally and coached her a little towards looking for other options (not suggesting moves), and eventually she did figure out a solution.

    Keep up the good work, it sounds like you're a great mom!

  12. #12
    Join Date
    Jan 2007
    Location
    new jersey
    Posts
    154
    hello mylittleangel.

    im 12 too and i wear my brace 18-20+ hours. trust me, i didnt have the funnest time at first. everyone cries over it too. [im like 75 pds] so like it was really hard at first and it still is but as time goes on she'll get more used to it and she wont cry as much. did you try loosing her brace? and what type is it?

    -heather
    i have scoliosis. third boston brace. (:

  13. #13
    Join Date
    Dec 2006
    Location
    California, Bay Area-ish
    Posts
    54

    Daughter help

    I totally get how your girl feels. I had JUST turned 13 when i first got my brace, but i was not as small as she is! I always cried and complained about it too, because it really isnt comfortable. What i found out recently that will hopefully make your daughter a little happier is that the doctors tell you that you have to wear it 23 hours a day because studies show that if they told the kids that they only had to wear it 16 hours a day (which i how much you are supposed to wear it) then they would wear it a lot less and take it less seriously. As long as she knows that she really should wear it as much as possible, then you can let her go brace free for a couple hours a day. My mom even lets me go without wearing it for pecial occasions (like my middle school graduation, my birthday, christmas, and easter) so i can dress up without worrying about my brace.
    I have a suggestion for the summer: swim ALOT! It helps to build up your back muscles so it isnt so hard to wear it, plus being in the water feels GREAT on a bad back. I am in the water at least 3 times a week during the summer, and i am going to be on the swim team at my school to help keep my muscles muscular. Have her try something like that, join a school sport. It helps to keep active, it takes your mind off of it. Soon she will be completely used to it.
    If your daughter ever wants to talk to me or you ever want to talk to me, you can e-mail me at eezily_amuzd@yahoo.com, just make sure that you put something about scoliosis in the subject line so i dont delete it!
    Molly

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