CF or not??

MKCzupLof

New Member

Joined : May 2017

Posts : 1

Posted 5/13/2017 2:25 AM (GMT 0)

My daughter, who is 7, had her gall bladder out in October. She was 6 then. In the hospital they administered a sweat test among many other tests. The results were a 48. Several weeks later they gave her another sweat test, and the results were 55. So in January her blood was sent to Johns Hopkins for genetic mutation analysis. Today the results came back: no genetic markers for CF.

I asked the nurse if that means she definitively does NOT have CF, and she said no, but probably. They're still concerned about the sweat test numbers.

I'm confused. I've been researching a bit, but can't seem to find a real answer.

Thanks!

straydog

Forum Moderator

Joined : Feb 2003

Posts : 19850

Posted 5/16/2017 7:53 PM (GMT 0)

I happened across your post & wanted to pop on for a minute. It is terrible when one of our children are having problems & the parent is left in sort of a limbo.

Does CF run in either side of the family? From what I have read both parents must have the gene. If your daughter was born in the states she was tested for CF at birth. Is this the pediatrician running the tests? There is genetic testing that you can ask the dr to run. Nurses can only relay minimal information especially over the phone. There is a very good chance the nurse couldn't answer your question because she didn't know the correct answer to give you. Also, there again because of liability reasons they have to be careful how much they can divulge because they are not a dr..

I am assuming you have a follow up appt with the dr & I would make a list of questions to ask.

Take care.

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