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Thread: Any advice on how to offer support to a recently diagnosed child?

  1. #1
    Join Date
    Aug 2007
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    388

    Any advice on how to offer support to a recently diagnosed child?

    Hi, My just turned 7 year old daughter was just diagnosed with scoliosis. We are still in the process of determining our options but given how many years of growth are left, it is almost certain that she will be put in some type of brace sooner than later.

    At this point she really has no idea what is ahead and how her life is going to change. I thought that many of you in the "adult patients" thread were probably diagnosed as children and could speak from your own experience about how to best break the news and how to help her deal with the related issues now and in the upcoming years? I am a wreck, but have been hiding it. I want to offer her support and empathy, but I don't want to scare her or make her feel like a victim...

    Any advice? Thanks!

    Jill

  2. #2
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    Aug 2006
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    369
    Hi Jill

    I also posted to you in the Spinecor thread. Your daughter is not alone there are are many kids out there with scoliosis and it helps for her to know that. I understand how you feel. My daughter was diognosed at 6 with a 33 degree curve. I was told to just wait and she will have surgery when she gets older. You are being proactive as I was . Please do not wait and watch as the doctors say. My daughter lives a normal happy active life because of spinecor and as things look now we may be able to avoid surgery. Yes she will most likley be in brace untill she is 13 but it really is not that bad. It is now (after 1 year) 2nd nature. It almost has made us stronger and has forced us to see more of the world because we have to travel to Montreal every 5 months. Each trip we make a mini vacation out of it and see different sites. Before we would just be homebodys ( I have dogs so we did not travel) But now I tell her because of her scoliosis we are seeing and doing more. I try to put a positive spin on things and it seems to work. She NEVER complains about her brace.

    Well I have babbled enough. This forum will be a great asset to you
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  3. #3
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    Oct 2005
    Location
    Grand Rapids, MI
    Posts
    313

    Dear Jill,

    Being the mother of a child with scoliosis has got to be a very great challenge, especially if you don't have it yourself. As I had it myself, I know that the most important thing I wanted as a child was honesty. BE as honest as possible with her, giving the information at a level that she can understand and needs at this time. Probably right now it sounds like you could just tell her that she has scoliosis, which is a condition where your spine curves more than it should as she grows, and that it needs to be treated, and she may need to wear a brace or have surgery when she gets older, depending on how she grows and what the doctors recommend.

    I don't think that the truth will scare her. Your attitude will make a big difference in whether she feels like a victim or not. You should be very matter of fact about it, that it is a medical condition, and lots of people have medical conditions, and we just deal with it as it comes to us and don't feel sorry for ourselves. My own mother did not do this well--she would say "oh, you poor thing, and I feel sorry for you" in my presence when I got my brace which she should not have done as this made me feel very victimized and self-conscious throughout my high school years.

    Another thing that would have helped me as a girl would have been to have known other people with scoliosis. If you know someone else who has scoliosis or has been treated for scoliosis, it would be good for her to be able to meet and talk to them. Otherwise there are some good websites for kids with scoliosis where they can talk to each other (on here and other sites others have mentioned).

    I know that you will do a good job as you are concerned enough to write us and ask how to do so. Good luck to you and your daughter and let us know about her progress.

    Deb
    age 48
    posterior surgery 7/24/06
    for s curve T72, L77
    50% correction
    DON'T WAIT TO GET STRAIGHT!!!

  4. #4
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    Apr 2007
    Location
    Seattle, WA
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    385
    Hi Jill,

    I felt similarly to you when my son was diagnosed. Since his birth, when I found out about his hemivertebrae, I think I was in some denial about the possible implications of scoliosis & how it might affect his life. My friend who is a school nurse helped me decide to tell him that everyone's spine has curves but that his curves were going side to side when they shouldn't. I made sure he knew that he was still healthy & that scoliosis was not an actual illness but a condition that we would have to treat. We took him to many different types of treatments. He eventually got a brace which he wore for almost 4 years & we called him our "man of steel", not only because of the brace itself but because he was being so strong by wearing it. We have always tried to be as positive as possible about everything. We talk about how everyone has problems/issues to deal with but some are in their bodies, some are in their heads/minds, some are family problems, etc. I just made sure he knew that we would find him the best possible care & that he was still a regular, normal kid who just had an extraordinary situation & more appointments to deal with than most of his friends. We have always tried to point out his strengths (smart, friendly, etc.) as being more important than his physical problem. Of course it doesn't help when the doctors talk about the "deformity" in his spine but he never really asked about that word...
    Anyway, he finally had the surgery, it went really well & he is still the same kid he's always been. Good luck with talking to your daughter about it - it's really a process since she's so young & will only be able to understand what she currently has to face. Any far in the future issues are not necessarily in her frame of reference or within her cognitive abilities to cope with or understand.

    Take care,
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  5. #5
    Join Date
    Sep 2006
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    33
    Hi Jill:

    A year ago, we had to tell our then 6-year-old daughter about her scoliosis. She had to go into a brace, so we had to tell her. I agree that answering any questions she has as honestly as possible is a good approach. As with anything with kids, I think it's best to give them as much info as they're asking for, and then see if they want more before pushing on. It was about four months into the bracing before she asked me how long she'd be wearing it. It was hard to tell her the truth--eight years--but she was ready to know, so I told her. Even though she's in the Spinecor, she does complain every day. Every kid is different, and only you know yours. (Even so, she may have some surprises up her sleeve for you.) My daughter's always been stubborn, and a year into this hasn't changed a thing about her attitude! There are terrific therapists out there who can help if you feel like it gets to be too much for you or your daughter. There's no shame in that. (I'm not a therapist--I swear!). Just do what feels right--you'll know better than anyone else what that is.

    Best wishes to you and your family in this tough time,
    Caroline
    From Massachusetts, USA
    7-yr.-old daughter in Spinecor 9/06-10/07
    Vertebral stapling surgery done 10/07 at Shriners in Philadelphia

  6. #6
    Join Date
    Aug 2006
    Posts
    369
    Well said Deb, Caroline and Laurie

    Jill we will all get through this and be stronger, our kids included!!!
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  7. #7
    Join Date
    Jun 2005
    Location
    Staten Island New York
    Posts
    298
    My daughter has worn a boston brace for three years she will be 14 yrs old next month. She has to wear it 16 hours a day, she doesn't wear it to school, but she wears it when she comes home until the next morning (she has had many days where she didn't have it on for as long as she should have) but at her last check up the curve has stayed in the low 20's. I also have scoloisis since I was 10 yrs old and I wasn't braced. At 44 yrs old I just had surgery 7 months ago to correct a 60 degree lower curve and 49 upper curve. For children my doctor recommends surgery if the curve reaches 40 degrees and it's better to operate after they stop growing. I read on the internet that a new kind of bracing has been developed. Having fuse-less scoliosis surgery. They put in bars (that are flexible) to hold the spine from curving and when the child stops growing they take them out and they don't lose their flexibility. Dr. Errico from NYU is involved with a company that has developed this new hardware.

    Sue

  8. #8
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    Aug 2007
    Posts
    388

    thanks

    thank you everyone all for your valuable advice. If anyone else also has thoughts I'd love to hear it. I hadn't been able to get online for a while because my computer broke (guess it got tired of all the time I was spending doing scoliosis research! ) I'm on a borrowed computer and am glad to be able to read your thoughts.

    I have told her more in dribs and drabs...she had an MRI last week which she viewed as an adventure since we'd get to see inside her. I told her that it could be pretty cool if she wanted to bring her Xray and MRI in for show and tell (When she starts to get braced, I think it would be best with her peers if it was out in the open...although that will ultimately be Katie's decision).

    After the MRI I did tell her that the doctors we are going to be traveling to see in the next few weeks might recommend a brace. She wanted to know if it would hurt....I told her that I didn't know exactly how it would feel but that it might be kind of like the palate expander that the orthodentist put in her mouth in that it would probably feel very strange and uncomfortable at first and maybe hurt a little.....and then she beat me to the bunch line saying "but I'd get more used to it over time?". So that's where we stand now. (at this point a brace is just a concept...she doesn't know what they look like). She doesn't want surgery (she heard the original orthopedist who diagnosed her mention this to me as a possible ultimate requirement)

    We'll know more what we're doing in the next few weeks. Thank you all for your input!!!!!!!!

    Jill

  9. #9
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    Sep 2005
    Posts
    24
    why dont you stunt her growth when she is in her teens..so the curvation dosnt get worse.

  10. #10
    Join Date
    Jan 2008
    Location
    Sacramento
    Posts
    3

    shorter leg

    As one whose back curved sideways due to a shorter leg, I just left another person my story (lengthy) about that. If it's not a shorter leg problem, I'll let others with those experiences guide you.

  11. #11
    Join Date
    Feb 2008
    Posts
    6

    we hope this will help you...

    Hi - our 7 yr old daughter has just had surgery to correct her scoliosis.. Check out this You Tube video.. if you are awaiting surgery we hope it will help and inspire you..
    http://uk.youtube.com/watch?v=KANauFWe8y8
    Mum & Dad to Naomi Age 7
    Diagnosed 15 deg. in 2002,
    progressed to 30 deg. by 2004
    Brace from 2004 to 2007
    progressed to 75 deg. by 2007
    Surgery to insert Growth Rods in Jan 2008 from 1T to 1L by Mr Lehovksy, Royal National Orthopaedic Hospital, London
    Surgery to lengthen rods expected unitl 2013 and the spinal fusion

  12. #12
    Join Date
    Aug 2007
    Posts
    388
    thanks everyone.

    rcsmith, I had seen your utube link on another post...you must be happy the surgery is over and very proud of your daughter!
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  13. #13
    Join Date
    Feb 2008
    Posts
    6

    1st surgery is over

    the first major one is over.. but she will have 10/12 more operations over the next 4/5 years and then spinal fusion... we havent found any other folks having growth rods as most seem to have surgery in their teens when they have stopped growing..
    Mum & Dad to Naomi Age 7
    Diagnosed 15 deg. in 2002,
    progressed to 30 deg. by 2004
    Brace from 2004 to 2007
    progressed to 75 deg. by 2007
    Surgery to insert Growth Rods in Jan 2008 from 1T to 1L by Mr Lehovksy, Royal National Orthopaedic Hospital, London
    Surgery to lengthen rods expected unitl 2013 and the spinal fusion

  14. #14
    Join Date
    Aug 2007
    Location
    Ohio
    Posts
    16

    scoliosis as a child and an adult

    Jill,
    I was diagnosed when I was five. My situation is different in that I was never braced or anything- I have a congenital defect- so no amount of braces would help. The nice thing about the congenital defect was that there was little pain associated with it as a child and teen. Life was as normal as it could be (or as normal as I knew)- and my defect is not insignificant. I would recommend educating your daughter in an age appropriate fashion. It may be something you revisit as she ages since her level of understanding and knowledge base will change. It wasn't something we spoke of in my house growing up and it stills makes my family uncomfortable. I think they have some bizarre misguided sense of guilt. I wish we had been more open in our discussions.

    It shouldn't change her life goals necessarily- although I adapted my goals to meet my physical challenges.

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