What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

son may have cf

sparky

New member
My son who is 20 is waiting to go back to a pulmonologist for a ct
scan.   They are trying to figure out what he has.
   The CT scan show some mucus in the small broncial
 tubes in his upper left lung.   He is in good
health and doesn't have any other symptoms.  Several weeks ago
he passed out for no reason.  We took him to the doctor who
looked at a chest x-ray.  He's had a broncolectemy (spelling)?
where they inserted a tube up his nose and into his lung and
sprayed some saline solution up there.   The tests have
all come back negative.   They don't know what is causing
the mucus.  Next step will be to go into his lung, through his
chest to get a sample for a biopsy.   While reading on
the internet I ran across this CF disease and now I'm worried he
has this.   Where should he go for a test to rule this
out or see if he has CF??<br>
  Thank you,  for any responses....
 

Emily65Roses

New member
Go to a CF center. You can find one here:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a>
Tell them what's been going on, demand a genetic blood test.
 

sparky

New member
Do you think he should have a genetic test and a sweat test?
 I was just reading about the sweat test as a way to see if
someone has cf.
 

Emily65Roses

New member
The sweat test also determines CF, but it much more often results in false negatives than a blood test does. In short, a blood test is more accurate. But you can do both, if you like.
 

sparky

New member
Thank you for your input....I really appreciate it.   <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Emily65Roses

New member
No problem! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to come back with any other questions.
 

anonymous

New member
How about your son's stools, do they seem to be normal & smell normal? That can sometimes be an indicator of CF too. (poor digestion)
What about your son's height/weight--does he seem to be at a healthy weight?

I wouldn't get too alarmed about a diagnosis of CF until you know a little more.
Please do keep us posted though.
 

Alyssa

New member
bumping **

I would definitely tell the doctors you want to thoroughly investigate the possibility of CF.

A sweat test is ok to start with, but if it were me I'd demand FULL genetic testing -- have them test for all 1400 known CF genes. Don't let them tell you they only need to test for the 97 most common.
 
Top