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Cystic Fibrosis Message Board

Unsure of CF


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Old 03-28-2014, 02:29 PM   #1
MamaC
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Unsure of CF

When I was pregnant, I tested negatively for CF, but my twin daughters NBS came back positive with a high percentage. The Neonatal Doc said it was likely they have CF, but there is a slim chance because they were born 8 weeks early the test could be wrong.

We have since had the sweat test done twice, but no results since my girls cant seem to sweat on their arms. They have a low body weight-even though they are 7 months old (5 adjusted) they are the size of 3 month olds. The pediatrician is concerned the CF is presenting with low weight gain, but we wont be able to know for sure until their weight gets up enough to sweat.

Has anyone run into similar issues with testing? Are there alternatives to the sweat test? And what is the likelihood they are positive when I tested negative? I am pregnant again, and am wondering if my husband should be tested this time.

Any advice would be so much appreciated.
-Lisa

 
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