Hello Everyone!!!!

[anonymous]

My name is Christina. I am 25 years old single mom that lives in Atlanta, GA. My 5 year old son Derrick has CF since he was born. Derrick is a normal 5yr old. He love video games, does great in school, and loves soccer. Sometimes he coughs but I really don't worry to much about it because every time he goes to the hospital for his check ups they always say " his lungs sound clear and he is stomach is good" Sometimes I wonder if my son even has CF. He is 50 pounds and is
3'10. I'm only 4'11 so he is way passed half my size. Also he has been on med's here and there but now he is not on any . I'm concerned about Derrick but should I be that concerned if the CF doctors are always saying he is fine. I don't know.

Christina

 

[Emily65Roses]

Always be at least somewhat concerned, because CF is serious business. But if his doctors say he's doing well, don't lose sleep over it. At least not for now. He won't always be totally healthy, so enjoy it while you can.

The only thing that makes me a bit anxious is that he's not on any meds now, so you said. He'll be healthy for longer if he goes on meds now. He needs to be taking nebulized meds and having some sort of CPT. If you and his doctors ignore that, he's liable to start showing signs of CF a lot faster. If you start with preventative therapy now, he'll continue to be so healthy that you "wonder if he even has CF" for much longer.

 

[anonymous]

Wow, must not be pancreatic insuffient to not need enzymes, too. Way our doctor explained it to us is that CF is a progressive disease. It will get worse. Initially the lungs aren't affected. CFers are usually born with normal healthy lungs, it's just with infections there is more scarring and the cilia or hairlike things in the lungs that help move out all that junk, stops working. So once lung function is lost, you never ever get that back. So we practice good lung care -- try to prevent infections, try to keep that gunk moving up and out with CPT and nebs 3-4 times a day.

We've also heard and I believe I even read this in that forbes article about the U of M CF clinic is that a lot of times doctors who aren't familiar with CF, don't know what they're listening for and will say a cfers lungs sound clear. Heck, I could hear DD wheezing when she was 7 months old and she had a bit of a cough. Took her to the regular peds doctor and she said, well everything sounds clear. Probably just an upper respiratory bug. Besides, CFers cough. That's what they do. I should've known better 'cuz DD never coughs, never wheezes. Next week had a regular CF clinic appointment and the doctor yelled at me. DD had CF bronchitis, could've ended up in the hospital, I needed to increase the amount of CPT -- more often and longer, was put on Septra, Tobi...

 

[JazzysMom]

I am wondering if Derrick has ever had a Pulmonary Function Test (PFT) done as well as xrays & any type of sputum or swab sample to check for any bacteria growth? I am only asking because sometimes things can sneak up & since he seems to be in good standing with his health, I was wondering how extensive his doctors visits are?