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Thread: Infantile Idopathic Scoliosis

  1. #16
    Join Date
    Jan 2006
    Posts
    13

    Welcome Mina and Tor

    Hello Mina and Tor,
    Iím sorry that youíre going through this, but how wonderful that it was caught at such a young age. Going through all the testing and waiting is the worst! My son had his first x-ray at age 11 months now heís 28 months and is finally done with 90 percent of the preliminary testing. He will have his first surgery (for a tetherdcord and a syrinx) next month. You can see a mini list of his anomalies in my signature.

    I to researched casting and vepter. In trying to determine which one you should learn more about you would need to know is the infantile scoliosis idiopathic (no known cause) or congenital (vertebrae anomalies such as fusions or malformations)
    Casting seems to only help idiopathic but has a very good reputation for these kids. Congenital is often just watched until (if) surgery is determined to be necessary. There are so many surgical possibilities I really canít begin to guess which one may one day be right for you. I do know that Vepter is considered a last resort and not a first choice for most kids.

    Shortly after I found this list I joined two yahoo chat groups that have been invaluable to me over the past year I strongly suggest you join the one that seems right for you or both as some of us have.
    http://health.groups.yahoo.com/group...guid=136818165
    First link is for congenital; the second link is for idiopathic / casting.

    http://health.groups.yahoo.com/group...guid=136818165

    I hope you have an easier year ahead of you.
    Best wishes,
    Tiffany
    Mama to 5 beautiful redheaded boys
    http://babyhomepages.net/5smurfyboys/index.php
    Rory age 13, Evin age 9, Brandel age 5, identical twins Keegan and Conley age 2. Keegan has progressive congenital scoliosis at 54į a hemi vertebra, two fused ribs, several vertebrae fusions, a missing right kidney and a syrinx causing lower limb nerve damage that will require surgery at the end of summer 2006
    Last edited by Tiffany S.; 09-07-2006 at 04:52 PM.

  2. #17
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi mina and tor,

    welcome! i was curious whether or not your daughter has been ruled out as having congenital scoliosis = fused vertebrae or ribs? since she has both a tethered cord and one kidney missing, it sounds like other organ systems are affected, and i would want to make sure that that is ruled out although it does sound like you have a lot of specialists involved.

    in general, veptr was originally used for those children with congenital scoliosis that had gotten to the point that they had thoracic insufficiency syndrome = affected lung function. although now they are doing this for kids who have infantile (idiopathic - no structural anomolies) scoliosis, i believe the child has to fit a very specific criteria to be considered. as for the serial plaster casting (which my son did for 2 yrs), that is solely for infantile scoliosis. if your daughter has infantile scoliosis, then i would be more than happy to discuss casting with you and suggest that you join another forum all about that. if your daughter has congenital, then i will have to defer to others (carmell), and would suggest that you join the veptr discussion board where there are super knowledgable parents to answer your questions.

    deshea
    mom to lucas (4 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o, spinal detethering due to a tight/fatty filum at 22 months, tlso and charleston/bending brace from 18 mos to 2 1/2 yrs old, serial plaster casting from 2 1/2 yrs old until june of this year, now in a spinecor brace at 18o/14o. of course , the future is uncertain, but as always we are laughing and enjoying life!) and ruby (2 yrs old and a handful!)
    north of boston, ma

  3. #18
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    tiffany,

    that is so funny! we must have posted at the same time and almost said the exact same thing . . .

    deshea

  4. #19
    Join Date
    Jan 2006
    Posts
    13

    Smile Hi Deasha

    Hey Deshea,
    That is funny Well you can cover the casitng group and I'll take the congenital...Hee Hee Hee

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