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Has anyone ever dealt with surgery for craniosynostosis?

My 17 mo old (corrected age 13mo) lil man was just diagnosed with Unicoronal and Metopic craniosynostosis, his sutures on his forehead and one side have closed prematurely. We're going for a second opinion tomorrow at Miami Childrens Hospital and am so afraid that I can't think up of the right questions to ask the doc. Has anyone ever been thru this and have you been happy with the outcome? How has it helped your baby? Would you do it all over again if recommended? Any thoughts on what I should ask the Neurosurgeon?

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mita811

Asked by mita811 at 12:05 AM on Mar. 4, 2011 in Kids' Health

Level 2 (9 Credits)
Answers (2)
  • Go to craniokids.org - there is lots of information and support there. My grandson was born with no soft spot and they thought he had craniosynistosis but it turns out he didn't. We were in a panic for about 3 months until we found out he was ok. I joined a couple of sites for support and that helped alot to chat with other moms that had gone through it. Best of luck and I hope your little guy comes through ok.
    Angelisa67

    Answer by Angelisa67 at 1:41 PM on Mar. 4, 2011

  • Thanks for the info I really appreciate it :)!
    mita811

    Comment by mita811 (original poster) at 10:25 PM on Mar. 6, 2011

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