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new born screening
- Thread starter anonymous
- Start date
Unfortunately, not every state includes testing for CF with the newborn screening testing. At the time my son was born and dx., which was 3 years ago, there were only like 5 states that included the CF testing. It is a shame it is not mandatory for every state to test for CF. Think of how much healthier some of the children with CF would be and how much better they would be growing.
Jodi, Mom to Tucker w/cf
Jodi, Mom to Tucker w/cf
NoDayButToday
New member
Also, even if the state includes CF in its newborn screening, the blood tests they run likely do not check for all mutations. There are over 1000 CF mutations, testing for all wouldn't be cost effective for the state (although in an ideal world, the health of babies would be more important *sigh*). So even if by the screening your little guy was shown as negative for CF, if he has rare mutations they could have been missed. If you and your docs are pursuing CF as a possibility, go for an Ambrey Genetics blood tests- it tests for ALL mutations. Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
NoDayButToday
New member
Thank you everyone. *smiles, slightly embarassed* <img src="i/expressions/face-icon-small-smile.gif" border="0">. Indeed I am 15, almost 16. I am pretty mature for my age, which I partially attribute to being an only child (around adults as company since I was pretty young) and also to CF, which I tend to think helps give kids a good head on their shoulders. <img src="i/expressions/face-icon-small-smile.gif" border="0">