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Looking for parents of infant's w/ scoliosis

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  • #1

    Looking for parents of infant's w/ scoliosis

    Hi..

    I would love to talk to other parents of infant's with scoliosis (preferrably under 3). What have your experiences been like? We are a hard group to locate and it can feel lonely not having anyone to relate to about the situation.

    Jennifer
    Mom to Greg
    Diagnosed at 13 months w/ 25% curve
    Progressed to 40% by 17 months.
    Appt. at Ark Children's 6/15/05
    Tags: None
  • #2
    Hi Jennifer...

    You're more likely to get responses if you post in the Parents section:

    http://www.scoliosis.org/forum/forumdisplay.php?f=100

    Best of luck with Greg!

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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    • #3
      Hi Jennifer,

      There are a couple of active Yahoo! groups for very young children and infants with scoliosis. You can do a search in the groups section for infantile scoliosis, and infantsandchildren with scoliosis, etc. You'll find more parents on lists like that. There is also a group called SpineKids that has a separate parents section (much like this board).

      My son was born with congenital scoliosis. He is almost 10yrs old now. I'd be happy to share our experiences with you. Braydon had anterior/posterior fusion surgery at age 11 months (fused from T5-L1). Then, at age 6, he had VEPTR surgery to implant two vertical, adjustable rods to support his spine and chest. He is doing very well today.

      My best to you.
      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/

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      • #4
        Jennifer,

        Like Carmell, my son is older (8) but he has had 7 surgeries for his scoliosis and was diagnosed at age 2. Also had several different kinds of braces and other therapies/methods to help improve his curvature...

        He is complicated (31 surgeries so far of various kinds) but a very special child (as is Carmell's son!).

        Holler if I can help....

        Hugs, Heidi
        Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

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