How accurate is the newborn screening test for CF?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

michaelsmom
New Member


Date Joined Apr 2009
Total Posts : 1
   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!

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   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
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.
Medication: Creon 10,000, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid,  Lofepramine, Slow-Sodium, Azithromycin, Ciprofloxacin, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


JKoroskenyi
New Member


Date Joined May 2008
Total Posts : 4
   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*


JKoroskenyi
New Member


Date Joined May 2008
Total Posts : 4
   Posted 12/6/2009 5:10 PM (GMT -7)   
Also I live in South Carolina!!
*Jillian Koroskenyi*


camogal09
New Member


Date Joined Jan 2010
Total 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.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 1:52 AM (GMT -7)
There are a total of 2,735,780 posts in 301,335 threads.
View Active Threads


Who's Online
This forum has 151435 registered members. Please welcome our newest member, Manny222.
160 Guest(s), 5 Registered Member(s) are currently online.  Details
Heatheranne87, Job_the_Phoenix, kimbfowler, Lymiemomster, sharron19


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer