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Anyone's LO hve Cystic Fibrosis?

lvisserlvisser member
in Special Needs

back story..

DS has been diagnosed with failure to thrive.  He has a lot of the symptoms of CF... all his bloodwork looked good (low iron...), so we are going to be getting a sweat test done next...

What symptoms did you LO have?

 

 

Rylee - 3.28.08
Malakai - 8.3.09
Ezra - 12.1.11 ASD
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Re: Anyone's LO hve Cystic Fibrosis?

  • CagleBabyCagleBaby member
    We are still waiting to find out. My youngest is the same as your little one. She also had two borderling sweat test. So now we are waiting on the genetic testing. It should be back by next week. Good Luck.
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  • lvnbraveslvnbraves member

    I have a LO with CF.  We found out at birth, due to complications related to CF and we found out during pregnancy that both DH & I are carriers.  We had no family history on either side with CF, so it was a big surprise.

    Please keep in mind that the sweat tests are NOT definitive.  Get the genetic testing done to be certain.  Also, know that the first round of genetic testing only tests for the top 75 or so mutations - there are something like 1400 known mutations.  So, if the first testing doesn't come back conclusive & symptoms persist, push for the full sequencing.  It costs significantly more, but may give you an answer.

    Baby Birthday Ticker Ticker Emergency ileostomy 11/28/10, CF dx on 12/3/10 and ileostomy takedown 1/24/11, feeding tube placed 7/1/11...still going strong! Little one lost 5w5d, 5/27/2012. CP 8/26/2012
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