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Ok, I know pancreatic sufficiency isn't supposed to predict lung involvement, but thought I'd ask anyway, since in theory secretions are at least a little easier to clear due to some cftr function. My daughter (6) has had pa since December and we can't get rid of it, although it has been I was...

Hi Everyone. My daughter has had a chest cold for 7 days so I have been monitoring her 02 levels. Coincidentally she is taking inhaled tobi right now. My question is, can inhaled tobi bring down 02 levels? It appears it is reducing hers by 2-3 points (she is falling asleep on tobi, so I know...

Hi everyone. My 5 year old still has pseudo after one month cipro/28 days of tobi. If it were you, what would you try next? We are waiting to start up Tobi again, but I am wondering if IVs should be tried. I suspect it is up in her sinuses. She went through a a few months of continual ear...

Hi everyone. my daughter has a cavity between her two front teeth. My question is, do cfers take any extra precautions when treating cavities? Unfortunately she finishes her pseudomonas erradication protocol with cipro and tobi a few days before the dentist can get her in. What are the...

Well, my daughter had her first pseudo (non-mucoid) culture, after 6 weeks of colds and chronic ear infections. Hence, it is probably in her upper airways per doctor. :( Friday she got tubes in her ears. Sunday her throat culture came back so........ We are starting 3 weeks of cipro and tobi...

Has anyone else had this problem? I have gone back to allegro medical (where I got it). They don't have it and can't seem to get it. Invacare doesn't sell directly. They gave me contact info of a bunch of vendors they work with, but they don't carry it either. One told me Invacare said it...

Hi. After a rash started on day 9 of bactrim, we discontinued and waited a few days. The ear infection my daughter had came back and Dr. prescribed augmentin. She has had this countless times before, but now it REALLY hurts her stomach, all day and night. We are giving probiotics, but with 7...

Hi. Is anyone with this mutation on Kalydeco off label yet? My 5yo is sick again and just looking for a little extra hope! Thanks, Edan

Hi there. After the new design, I was somehow locked out of my current account. Username is Edan. Is there anyway you can reinstate it? I have a great deal of personal messages on there I would like to retrieve. Thanks so much, Edan.

Hi everyone. I was wondering what has been included on others' 504 plans regarding respiratory issues. I don't want to overwhelm the school, but obviously want to have the necessary items on there. What has been deemed "reasonable" according to your experiences? Thanks so much Edan.

Hi. This is Edan. My account somehow got wiped out. I have a question... My daughter was coughing for nearly 3 weeks as the result of a PND (I think). After 2 weeks, I brought her to the pediatrician. Lungs/ears/nose/throat all clear. A week later she saw the ent. He saw nothing but...