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?
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.