Recent content by Kirio

I don't have experience with Tulane, but we go to the CF clinic in Jackson and the care is fantastic. The drive from Ocean Springs to Jackson is a pretty easy three-hour trip.

I am interested in trying anything that will help my kiddos get rid of bacteria in their lungs, but has anyone run across Lipoid Pneumonia in their research? Apparently inhaling any kind of fats (as in oils) can be really dangerous, especially if your lungs are already at risk. Does anyone...

On a related topic, if for some reason your meds or illness mean you can't breastfeed, don't despair. New research that was published last year indicated that the differences in breastfed and formula fed infants are much less than previously thought. Here's a link for more info...

Just a quick clarification so that your doctors will know for sure what you're asking about: Homeopathy is a specific reference to treatments using what they call "the memory of water". The idea being that water remembers what has been in it and you can safely use the healing powers in, for...

We are. Her fecal elastase test came back severely pancreatic insufficient. The CF diagnosis and PI were a big surprise at the clinic because she is so healthy (though they discovered some lung issues). We've been told she needs to do the enzymes despite all her blood work coming back with...

The doctors prescribed it as soon as her diagnosis was confirmed, but we are on our third month waiting for BlueCross to approve. It's hugely frustrating. Hoping every day for the phone call letting us know she can start! And that she does not experience any of the side effects that would mean...

Hi, I am a mom to two CF kiddos. Our son (8 months) was diagnosed at birth after a positive newborn screen. Our three year old daughter had a negative screen but we had her tested just in case, and she was diagnosed as well. Both have one copy of F508 and one of G551d, so we have high hopes for...

Bill, She took them the first day or two in applesauce or yogurt, but she chewed them and her mouth started to hurt. Now she won't go near applesauce, yogurt, or anything with sprinkles. She has never seemed to have any stomach pain and is growing well and gaining weight.

Thank you so much for the quick responses! I am going to look at the Ellyn Satter site now. We are in Mississippi and, thankfully, live near the only recognized CF Center in the state - UMMC. The folks there are great, and were being supportive of our enzyme failure when they agreed that age...

My son (8 months) was diagnosed at birth and his 3 year old sister was just tested and diagnosed with CF as well. Obviously we cannot keep them 6 feet apart, but we wash and sanitize as much as we can. Does anyone have experience with two CF babies? How do you handle cross-contamination...

My son was diagnosed at birth last year. His three year old sister was recently tested and has CF as well. She has been a picky eater from birth. She is not underweight and her vitamin levels are all good, though she is severely pancreatic insufficient. She refuses to take her enzymes (the...