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Klippel-Feil syndrome

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  • #1

    Klippel-Feil syndrome

    My son has been diagnosed with Klippel-Feil Syndrome because of a occipitoatlantal fusion (C1 to his skull) of his cervical spine. That seems to be the only anomaly he has. The doctor(who is the head of orthopedics) at pittsburgh children' hospital says there is nothing to do but wait and see. My nine year old who has been very active(4 years of football), now can do nothing for the fear of this fusion breaking off and cutting into his spinal cord. I don't know what to do
    PittsburghMom
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  • #2
    Welcome!

    Get another opinion. You won't feel better until you know for yourself that the recommendations your ortho gave you are right for your son. I know you are in Pitts, but there are other good orthos who have cervical spine experience in PA - Shriners in Philly has good, experienced docs. Boston Children's is good too.

    It's hard to suddenly alter your child's life. I know. However, after coming to terms with the facts (yes, there is a reality of injury to his spine/spinal cord if he continues to play) help him sort out his thoughts. There are SO MANY other sports/activities that he CAN do. What are his other interests? Help him find something that helps him be active and that is as "normal" to him as possible. My 10yr old is not allowed to play full-contact football either. The only time he's ever been sad about his body's issues is when he realized his rods will never come out, and that he won't be able to play football like his brother. He has focused on other things to occupy his time. It doesn't change the fact that he's sad about never being able to play football, but its not a life-altering sadness for him.

    I hope you find a way to help your son. Good luck and keep us posted on his progress.
    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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    • #3
      Hi PittsburghMom...

      I think William Lauerman has experience treating Klippel-Feil kids, and he's not to far from you:

      http://www.georgetownuniversityhospi...&doctorid=4448

      --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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      • #4
        Klippel-Feil Syndrome

        My son, 8, also has KFS with cleft palate and scoliosis. Anyone else out there living with this? I'd love to chat.

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