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DOSE ANYONE KNOW OR HEARD OF SAETHRE-CHOTZEN SYNDROME?

IM ASKING BECAUSE MY 2 1/2 YR OLD DAUGHTER HAS IT.. WE JUST FOUND OUT ON APRIL9TH.. TO MAKE A LONG STORY SHORT.. SHE S LOOKING TO HAVE SURGERY ON HER SKULL .. WITCH WE WERE TOLD SHOULD OF BEEN DONE BY SHE WAS A YEAR OLD.. NOW THE DOC S DONT KNOW IF SHE WILL BENIFIT FROM IT OR NOT.. HER SKULL FUSED TOGETHER AT AN EARLY AGE AND NOW HER BRIAN DOSENT HAVE ROOM TO GROW..... WELL IF ANYONE HAS ANY INFO PLZ LET ME KNOW THANKS!

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shreveskids

Asked by shreveskids at 12:53 PM on May. 3, 2009 in Kids' Health

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Answers (3)
  • I don't but here are some sites with more info:

    http://www.craniofacial.net/saethre_chotzen_syndrome.htm

    http://children.webmd.com/saethre-chotzen-syndrome

    http://ghr.nlm.nih.gov/condition=saethrechotzensyndrome
    kaycee14

    Answer by kaycee14 at 3:53 PM on May. 3, 2009

  • Saethre-Chotzen Syndrome usually is characterized by stenosis of the skull at an early age and syndactyly (fused fingers), but everything else is usually fine (mental faculties are normal, internal organs are normal, etc.) This is a very rare disorder!

    I'm sorry your little one is going through all of that and I'm sorry you have to watch your baby go through surgery.
    Pieta0227

    Answer by Pieta0227 at 11:25 PM on May. 4, 2009

  • thank you so much i found some info on the sites. thanks again
    shreveskids

    Answer by shreveskids at 2:00 PM on May. 5, 2009

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