Welcome!! Sorry to hear about Rickie's diagnosis. But as you mentioned he has been dealing with this all of his life, at least now they can try and solve some of his problems. I also have a 6 yr old with cf. Night time coughing has been a big problem for her too. Yes, IV's are often giving if a cough has been going on too long. My daughter had her first (called tune-up) in August. She started pft's last year and they were always in the 60's. After her tune-up, they rose to 95%. So the tune-up really helped and her coughing did get better.
One other suggestion - take him to a GI dr as well to see if he has reflux. He most likely will need a probe to see how many times he is refluxing during the day and night. He could be refluxing a lot at night making him cough and also possibly aspirating into his lungs. Prevacid is also a good drug to help with this. Most cf kids are on some type of reflux medication even if they don't have reflux. It helps the enzymes work better. Even though I didn't think my daughter had reflux, her probe last year showed really bad reflux especially at night. She ended up having a procedure called Nissan Fundoplication which helps eliminate this problem. Her cough is much better after the procedure. Something else that has stopped my daughter's night time coughing is an occasional prescription for prednisolone.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
