Cystic Fibrosis

I was randomly looking around Instagram and saw a picture of a nebulizer and a girl saying that she was coming out with her disease and that she was battling cystic fibrosis.

I got curious (because R uses a nebulizer also) and started researching CF. R has all the symptoms of it. When I was pregnant I got tested for it and I had the 1 gene, but his father never got tested. R got tested as a newborn (but was only 24 weeks gestation) and never tested again. Now at 3 years old, he still has chronic constipation, HORRIBLE smelling bowel movements (when he does go), and requires breathing treatments at least twice per day for his lungs.

I always thought his poop problems were from all the stomach surgeries he received from his G-Tube. I also put his lung problems on his prematurity and the history of asthma in the family. But now that I think about it, his developmental pediatrician wanted R to get a sweat test done. After reading on the disease, this is one of the ways they test for CF. I never got it done, but now I'm wishing that I did.

I plan on calling his pediatrician and asking for a referral for testing to be done. What are your experiences with CF? If you know someone or have a child with it, what were their main symptoms and how do they deal with it?

Yes, take him in to get tested! My husband's cousin has CF and was diagnosed at age 5 with the disease. I'm not really sure what symptoms he had, but I know he had a lot of stomach issues.

Quoting lauren ♥ 20 weeks:" Yes, take him in to get tested! My husband's cousin has CF and was diagnosed at age 5 with the disease. I'm not really sure what symptoms he had, but I know he had a lot of stomach issues. "

Oh I plan on it!   I already called this morning, just waiting on a call back.

I have a facebook support group for CF parents and families. If you want to like it, heres the link

https://www.facebook.com/pages/Cystic-Fibrosis-Support-Group/425815637502581


I have a daughter with Cystic Fibrosis also if you would like to message me