"normal" coughs for CFer

[Aboveallislove]

DS is 3.5 years old. For about the last year, he has had productive but random coughs. (He had a cough since birth but not really productive, more a "tickle cough.") He'll have coughing spells for 10-20 minutes at night sometimes 5 nights a week, sometimes 1 night a week, but in the spell, he'll only have a couple productive coughs only ever couple minutes. It does not wake him. And the next day he won't have anything more than some coughs during treatment and maybe AT MOST a half a dozen random productive coughs throughout the day. And some days really none. We've discussed with the CF doctor and b/c he doesn't wake at night and b/c it is hard to tweak out the acid reflux (which is severe) and CF, we aren't doing an antibiotic course. (He has only cultured staph for the last year and has cultured that since 2 weeks old and h-influenza on and off from 1.5 - 2.5 years). And the staph was sparse or moderate (varies each time). I'm not keen on doing antibiotics unless necessary b/c, besides not wanting to build resistence, he has horrible GI issues and can't handle flagyl which was what he was on last time (literally had to hold down and give him .1 of a ml at time and then he still vomitted about 6 times out of the course).

So what I'm wondering is this just "normal" CF cough? I know some say 'base line" is no cough. And then there was the discussion of kiddos having coughing spells and getting dirty looks, which makes me think that coughing is the "norm" even without an excerbation (which is what I thought too). Thanks!

 

[mysticrose]

Have they thought of doing a fundoplycation? My oldest was about 6 when she had her done. She would cough and puke up phlem because the reflux got so bad. We didn't know it was bad because she never complained about it. When they scoped her they found scaring all through out her esophecous(sp). She hasn't had an issue since having the surgery. It about made me cry first time she ate tomato soup and said "I don't have a funny feeling in my throat when I eat it now, is that normal?"

From what I understand "baseline" is subjective to patient. Like my oldest her baseline was always a light cough to now she has a pretty harsh cough. My second oldest has a baseline of no cough as does my third with cf. Hope that helps some.

Jen mom to 4 kiddos. 3 w/cf and 1 lucky red head.

 

[JENNYC]

Wow mysticrose that would make me cry too!! I know nothing about acid reflux, thank goodness Abby has never suffered from that. But I will say she did get a cough just like you are describing when she would culture the H-flu. Since her baseline is no cough I would get her antibiotics and it would go away. But she would cough like that at night and never wake up and it would just worry me to death. And she also did the tickle and some half way productive coughs too. But like I said she never has had the acid reflux. But we all know that she is just a different little girl Hope his cough gets better!!!