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
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
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Had a Port-a-cath fitted on chest wall since Nov 05
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Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
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.
*Jillian Koroskenyi*
Posted 12/6/2009 5:10 PM (GMT -7)
Also I live in South Carolina!!
*Jillian Koroskenyi*
camogal09
New Member
Joined : Jan 2010
Posts : 5
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.
Currently it is Monday, December 10, 2018 4:51 PM (GMT -7)
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