can a six year old be diagnosed with CF?

anonymous

New member
hello,
i was wondering if a child can be diagnosed with CF at age six? is it possible for both a prenatal screen as well as newborn test be negative and a child be diagnosed years later? if so, how could it be? thanks so much for your help.
 

anonymous

New member
I guess it could be possible if the child has two very rare mutations. Neither would have been detected by the earlier screenings. Does he/she show symptoms of CF? Only a sweat test or blood test will truly confirm anything.

Good Luck!

Maria
 

Emily65Roses

New member
Yes it's quite possible. Six years old is not too old to be diagnosed. As far as the parental screen, if you don't carry one of the more common genes, it could've gone unseen, yes. And for the newborn screening, there are very often false negatives on CF tests. We see people coming through here saying that they got 4 negative sweat tests before they finally got the correct positive one.
 

anonymous

New member
It also depends what the prenatal tests and newborn screening tested for. Many states don't do newborn screening for CF. Many insurance companies won't cover prenatal carrier testing on the mom unless there is a reason (family history of CF). To test for CF (or to see if a parent is a carrier)- it has to be a specific type of test - those general prenatal/newborn tests are not for CF. The most accurate way to test a six year for CF is the sweat test. It is very simple to have done.
 

anonymous

New member
I have a twin brother who was tested when he was 6 and it came back negative. When we were 22 I was tested and it was positive he was positive too. Anything can happen.

Dave 30 w/cf
 

anonymous

New member
Dave, there you are, haven't seen you for a while. Off the topic-were you able to find those other nebulizers?

Julie
 

sknoell

New member
Yes it is possible. My son, was 2 when he was diagnosed. It was completely missed because his newborn screen was negative for CF. What you don't realize is in most newborn tests, they only test for the 1 major mutation and our son had 2 really rare mutations. Ones the CF doctors had to research to get information on. They still don't know much about them or how well he is expected to do. It is all overwhelming but we are better for knowing because now he gets over a cold in 7-10 days as opposed to 3 weeks. Hope this helps.
 

anonymous

New member
<img src="i/expressions/heart.gif" border="0">Hello, It is very possible my son was 3 months old when it was suspected that he could have CF,however my girl age 6 who in hind sight had ALL the symptoms of CF and who tested negative via a sweat test in her early years
was diagnosed via genotyping at the age of six and my son also that was five yrs ago
 

anonymous

New member
To the last poster, I have a few questions regarding the diagnosis of your older dd if you don't mind. My ds had a negative sweat test and a negative genetic test from genzyme but his drs still suspect he has cf. When your dd tested neg on the sweat test, was it at a hospital that's acreditted by the cff?? Also, do you by chance know what her sweat chloride number was and what two mutations she has? Were her mutations rare? THanks!!!
 
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