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I need help. I have a 2 1/2 year old daughter with CF who has done well with eating all this time. My issue is the people caring for her. I need to be able to tell them exactly how to dose the creon. MD says take 4 with meals, 2-3 with snacks. She's on creon 6. I usually give her 2 to start a...

We're kind of new to the CF world and I am always worried about my daughter getting enough calories.  While searching around on the internet I came across something called Benecalorie.  It looks like its made by Nestle.  Anyway its liquid and comes in 1.5 oz packs and has 330 calories and 7 g of...

We're kind of new to the CF world and I am always worried about my daughter getting enough calories.  While searching around on the internet I came across something called Benecalorie.  It looks like its made by Nestle.  Anyway its liquid and comes in 1.5 oz packs and has 330 calories and 7 g of...

Does it ever get better? We never have a week of normal stools and its very frustrating. She'll go from having 1 large formed stool for 1-2 days to nothing for a day to several somewhat loose stools for a day. None of them are greasy and she doesn't seem uncomfortable. I just don't know what...

I am about to start working on getting my almost 2 year old to swallow her creon. I am curious about the timing. Do I need to wait for a few minutes after she takes the creon before she eats anything? Or can she eat directly after taking them? We don't have another clinic appt until April and I...

I am about to start working on getting my almost 2 year old to swallow her creon. I am curious about the timing. Do I need to wait for a few minutes after she takes the creon before she eats anything? Or can she eat directly after taking them? We don't have another clinic appt until April...

We have a Pari compressor for our 18 month old. About 6 months ago it started to "act up". Meaning that it would take about 5-10 minutes to get warmed up before enough air would come through the nebulizer to adminster the medicine. It was very aggravating. So we called Pari and sent it back...

We have switched dosages and ran out before we normally do. I've reordered, but its not here yet!!!!!!!! Was suppose to be delivered today. What happens if they don't take Creon? She's only 14 months old. Should I just feed her less fattening foods until the Creon comes or what? I'm a...

What's the feeling on humidifiers for CF babies? I've noticed that my baby is sometimes stuffy in the morning and didn't know if that would help?

We have an almost 5 month old and we are so caught up in how much she eats, its making us crazy. We are currently feeding her about 8 oz of formula 4 times a day, sometimes she eats 9 or 10 oz. We just started adding in rice cereal at about 2 of those feedings and she's taking a couple tbs of...

We have a Pari compressor with Pari LC Plus nebulizer. We are doing hypertonic saline twice a day. We were told by another CF parent to take the cap off the nebulizer to make it go faster, but it still take over 15 minutes. Is this normal? We've changed to a new nebulizer, we've cleaned the...

My daughter was diagnosed at 2 weeks of age. She was born with a meconium ileus. We were seen by multiple doctors because we were in the NICU for a month. A Peds GI doc put her on actigall and I still can't figure out why. Is anyone else on this or has anyone heard of another CF baby on it...