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Thread: SpineKIDS

  1. #1
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778

    SpineKIDS

    Not sure where to post this, but it was recently announced that SpineKIDS forum will be shut down at the end of the month. I know a lot of us, myself included, have recommended the site to the kids/teens who come to this site since we don't have a lot of kids/teens on our site.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Wow, that's too bad. Hopefully, the kids will find their way here.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Marylou i was on here shince i was 13 teen years old. i joined spinekids back in 06
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  4. #4
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Linda,

    Yeah, it is too bad because it is a great place for the kids. I've recommended this site to the kids. Hope it doesn't mean a ton more work for you!

    Kara,

    I know you've been on this site before, but what I meant was that we don't get a lot of people 18 and younger on this site. In our adolescent section, which is reserved for those under the age of 18, we don't get a lot of people. Now that you are 19, you've moved up to the adult section of this forum instead of the kids/teen/adolsecent section.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  5. #5
    Join Date
    Sep 2008
    Location
    Canada
    Posts
    60
    My daughter was very disappointed when she logged in to Spine Kids the other day and read the news. She goes on it every day!! Hopefully she will be able to find other kids to talk to - it sure helps not to feel so alone.
    CAmomof2

    July 07 - T 26*
    Aug 08 - curve now 22*
    Sept 08 - SpineCor Brace (in brace 17*) Ste. Justine
    March 09 - in brace 14*
    Aug 09 - in brace 14* / MRI normal
    Feb 10 - in brace 18* - had an oob xray - now 35*
    June 10 Considered VBS T 32*, L 27* , Stopped SpineCor brace
    Sept 10 T 38*, L 26*
    April 11 T 45*, L 31*
    July 11 T 51*, L 37*
    MIS SURGERY - NOV 28, 2011 / Age 12 / Fused T4 - T12

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Wow, what a shame - I'm sorry to hear that.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  7. #7
    Join Date
    Nov 2005
    Posts
    402
    This is a huge shame. I regularly refer people to Spinekids (as I do here - although I'm a mod at SSO I send people wherever I think will be most helpful to them). Spinekids has been such a lovely, colourful, safe and friendly community for the teenagers and I hope that they manage to keep things going with their Facebook group.

  8. #8
    Join Date
    Oct 2007
    Location
    Maryland
    Posts
    49

    SpineKIDS

    Quote Originally Posted by tonibunny View Post
    This is a huge shame. I regularly refer people to Spinekids (as I do here - although I'm a mod at SSO I send people wherever I think will be most helpful to them). Spinekids has been such a lovely, colourful, safe and friendly community for the teenagers and I hope that they manage to keep things going with their Facebook group.
    Was Spinekids replaced with another forum for children? It was so helpful for my daughter when she was first diagnosed and braced. I met a students at my school today who was just diagnosed and braced. I wanted to share this resource with her and her mother. Any other suggestions for support for children?
    Daughter 17.5 (diagnosed @ 12 yrs) in Sept 2007 AIS
    Oct 2007: T-20, L-20 [160 cm]
    Mar 2008: T-24, L-24 [163 cm], started Cheneau brace
    May 2008: T-16, L-7 (in-brace) [164.2 cm]
    Oct 2008: T-23, L-15 (out-of-brace) [167 cm]
    Feb 2009: T-20, L-18 (in-brace) 2nd brace
    Jun 2009: T-20, L-16 (in-brace) [172.2 cm]
    Dec 2009: T-33, L-16 (out-of-brace) [173.8 cm]
    Apr 2010: T-25, L-12 (in-brace) [175.3 cm] 3rd brace
    Mar 2011: T31, L20 (out) [176.2]
    Jul 2012: T31, L20 (out) [177.2]

  9. #9
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    My understanding was the SpineKids group reformed on Facebook.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  10. #10
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    There now a site called curvy girls scoliosis
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

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