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How accurate is the newborn screening test for CF?

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Posted 4/20/2009 12:11 PM (GMT -7)
I have a two year old son. I did not have a prenatal test for CF but in the state of SC newborn screening for CF is mandated.

My son passed the newborn screening test for CF.

He is off the growth chart for weight, has loose stools every time he goes to the bathroom, and a constant runny nose that has not responded to allergy meds. He has a typical two year old appetite.

He saw a ped. endocrinologist that tested for hormone issues, etc. that could cause poor growth and they did not find anything.

My pediatrician recommended that we follow-up with the endocrinologist and ask about doing a sweat test.

My question is as follows: If my son passed the newborn screening test for CF, why would we need to do more testing? Is there a lot of false-negative test results?

Thanks!
Posted 4/20/2009 12:36 PM (GMT -7)
Hi there and welcome,

I'm sorry for what you're going through. Any waiting and testing for CF must be so nerve racking as a parent. I can't imagine what it must be like.

New born screening isn't 100, I don't know the exact figures, but false results can occur. Depending on whether the test is done early or late enough I think it varies on each child as to when the test needs to be done. I can't explain it very well, as I've only read up on it once and am picking on bits I remember.

I think the new born test is done as it catches more children straight away. Though the test isn't the best. CF is best caught as early as possible and the sweat test doesn't work on newborn babies.

Hope this information helps you understand why the extra testing will need to be done on your son. I'm sorry it doesn't ease your worries though.
Hope everything works out ok
Gem
Posted 12/6/2009 5:09 PM (GMT -7)
Both of my son's were considered border line when they were born so they really did not tell me at first.  Until they started getting sick and then they did the sweat test so I would go ahead with the sweat test.
Posted 12/6/2009 5:10 PM (GMT -7)
Also I live in South Carolina!!
Posted 1/4/2010 3:13 PM (GMT -7)
Go to Chapel Hill, NC .. They have a National CF center there. You can get a sweat test taken. My understanding is that the newborn screenings are simply, a screening. But a sweat test at a National CF center is an actual accurate tool to test for it. My CF nurse recently explained that to us because my cousin's son's stools are suspicious along with respiratory problems. With me having CF as well, it raises more concern.
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