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Thread: New here

  1. #1
    Join Date
    Nov 2003
    Posts
    7

    New here

    I'm so glad I found others that can discuss infantile scoliosis! Everything else is so geared towards teenagers!

    My son Jared is 2.5 and has about a 20 degree curve to his spine. I found it. He went for a ultrasound last week of his kidneys and bladder. They found an enlarged left kidney and he will be going for more testing next month.

    Waiting really is the hardest part... Since it was just discovered, they are playing wait and see on the curve. It scares me that he is so young and has such a high (to me) degree curve. He also has at least 2 hemivertabrae. Oh and 13 ribs on one side 11 on the other. I'll tell you it doesn't stop him or slow him down. He's more rambuncous at 2 then my other son was!

    So that's a little about me and Jared. I'm looking forward to getting to know you!

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Suzie,

    I posted to you on the other list... if you didn't read it, let me know...

    I also wanted to say that if Jared is already 2.5yrs old, and his spine hasn't gotten worse, that's great news. We learned that every person's spine has two major growth spurts - one by age 2 and one at puberty (which is the assumption for many idiopathic teenage scoliosis cases). If his curve is still measuring around 20 degrees (remember there is a +/-5 degree margin of error when even the same doc is doing the measurement/reading) then his chances of growing and not needing surgery are much better.

    I hope you are seeing a pediatric orthopedist who specializes in spine malformations. If not, I strongly recommend this. There aren't many, but they are out there. Your spine is nothing to mess around with.

    Bracing will not be helpful to Jared, because of the hemivertebrae - a brace can't make his back be straight when it didn't start out that way.

    Let me know if you have any questions. I'd be happy to email you my home phone number if you'd like to talk - written information is hard to go by - lots of questions come up, then you (I) forget what I was going to say.

    Take care!
    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/

  3. #3
    Join Date
    Oct 2003
    Location
    Vancouver, Canada
    Posts
    20

    Hi Jaredsmom!

    My son has several hemivertebrae and is being successfully braced. His curves are not currently changing. Carmel has a lot more experience than I do on complex spinal problems, but I would not rule out bracing as an interim measure.

    My son is now three and grows very slowly. This has probably helped him with his curves. He measures only 79 cm long right now, and weighs just over 19 lbs. Sorry for the mix of metric and imperial measurements!

    Susan
    mum to Malcolm, 3 years minus two days, multiple hemivertebrae unincarcertated, detected at birth, monitored from birth, no surgeries yet.
    Surattius
    Mum to two boys with scoliosis

  4. #4
    Join Date
    Nov 2003
    Posts
    7
    thanks friends ;-) I appreciate any and all input!!!

  5. #5
    Join Date
    Feb 2004
    Location
    colorado
    Posts
    4
    Have you checked out infantilescoliosis.com?
    This site is full of info for parents of children with infantile scoliosis. The support group is very active.


    heather

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