Our 10 year old diagnosed

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

Corbin Family
New Member

Date Joined Jun 2013
Total Posts : 1
   Posted 6/27/2013 10:16 AM (GMT -6)   
Hello to all,
I have tried to do tons of research and have found that you wonderful individuals on this board are amazing.  Brief backstory.  Neither of us parents have ever had any family history of CF.  Not as far back as we can date to the late 1800's.  Of course we have know seen and done enough research to see that there doesn't have to be.  Know to the meat of the matter. 
Our 10 year old daughter had been coughing along with her sisters age 8 and 3 for about 3 months with a spring cold we thought.  However hers did not pass like the other girls.  We took her in to our family doctor who did chest xray and diagnosed her with pneumonia.  However his wife is a pulmonologist and they called us back 2 days later and told us to bring her back in.  We did and they immediately set up a visit with a specialist hours away.  Needless to say they performed (or attempted to) breathing test of which our little one couldn't really do all too well without coughing.  They perfomed a sweat test which came back as 72/70.  She was diagnosed with CF and told us we needed to come back in and redo the test and also have the other children checked.   We drove down to the City and again her test was 74/72.
I guess our question is this.  She has never shown a single sign of CF until a cough 3 months ago.  She is healthy, active, weighs more than most kids her age, and doesn't complain of any stomach isssues.  Can you ever have the sweat test come back positive like this and actually have either a mild form (and what does that mean), or can you actually just not have CF and have something else causing the high sweat test. 
Thank you in advance.  I am sure a lot of parents go through this phase first on this forum.  It is just a little shocking to us that she was even thought to have something like this when she has always been so healthy.

New Member

Date Joined Aug 2013
Total Posts : 3
   Posted 8/14/2013 2:00 PM (GMT -6)   
There are hundreds of different mutations of CF. She probably does have a very mild case. She may have the mutation that focuses on allergies. Other strains can focus on different things like organ, lungs, stomach, bones and joints, sinuses, nutrition. With CF you can have trouble with all of the above or just one. But that doesn't mean those issues wont show up in the future. Good luck!

New Member

Date Joined Aug 2013
Total Posts : 1
   Posted 8/17/2013 11:32 AM (GMT -6)   
A friend of mine had this. She had breathing issues, but eventually she needed a lung transplant. She had other disorders and passed away at 23 bc, but she did fine, she had special exercises to help her and was doing great in that department.

Wiley Coyote
Regular Member

Date Joined Jan 2015
Total Posts : 37
   Posted 2/1/2015 6:45 AM (GMT -6)   
There are mild cases of CF like this. CF can involved GI and Lung, lung only, or GI only. There are many modifyer genes, sometimes the illness does not really seem to "kick in" until later in life. MUCH later in life for some. It can be a tricky thing. Since pulmonary is her thing, its important to get her on the daily CF meds, since lung issues are the major cause of decline.
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, August 20, 2018 5:30 PM (GMT -6)
There are a total of 2,994,874 posts in 328,172 threads.
View Active Threads

Who's Online
This forum has 161302 registered members. Please welcome our newest member, BangedUp.
312 Guest(s), 9 Registered Member(s) are currently online.  Details
sharpcut, Cmburks, RandyJoe, BBN!!, Hummingbird22, Saipan Paradise, kit49, bubbatc, borborygmi