kaylinsmom
Member
Thanks for the advice!! She has not been diagnosed. We are in the waiting game right now. They want to see if the meds she is on will help control her asthma before they give her a diagnosis of cf. All the tests they have run have been borderline!(no help) And the full genetic test showed a rare mutation. I think its G576A or something like that. I will have to look back in my notes for that. As far as her not having the "normal" asthma, she doesnt wheeze, she doesnt having gasping or turn blue or anything that you would think is asthma. When I know she is about to get sick, she starts with a congested cough which she coughs up green mucus and after a day or so it turns into a nonproductive, dry, annoying cough.Then, she atarts with a low grade fever. If it goes on too long without the meds helping, her breathing is rapid and it will usually turn into pnuemonia. But, we have figured out to to treat it before it gets that far. I have stayed up many a nights counting her breaths before they gave me the peak flow! She had pnuemonia 3 times last year and a collapsed lung! The collapsed lung was in April and she has been pretty healthy since then. We go to the gi doc next week. Her pulmo wants to see if the gi can get her reflux and stomach issues under control and see if that helps her respiratory problems. Thanks for all the advice. I know I go on and on! Sorry, its nice to have this website for some good help!