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When did you start taking inhaled TOBI as opposed to IV? Do your doctors ever deem it appropriate to give IV tobra when you've already been taking inhaled tobra? Once colonized, does it matter which route you take? Concerned about IV side effects....

We've been great with maintaining Ellie's CPT sessions to three times daily x 20 mins (approx times 9a, 4p, 12 - 2 am). She can easily sleep for 12+ hours and we're considering letting her sleep through the night without CPT and moving the three sessions to her actual awake hours (i.e., 9a, 3p...

Ellie is almost 11 months old and still can't tolerate solids. She gags with anything slightly thickened...even stage 1 baby foods. It's very frustrating! Is this common with cystic fibrosis infants??

Ellie was admitted to the hospital at 2 weeks old due to a gagging cough (probably exacerbated by the horrible fires we had in CA last year, in addition to a virus). It was obvious that she required treatment at that time. My questions now are: 1. Why/when was your child admitted as a...

<a target=_blank class=ftalternatingbarlinklarge href="http://health.nytimes.com/ref/health/healthguide/esn-cystic-fibrosis-ess.html?ref=health">http://health.nytimes.com/ref/...is-ess.html?ref=health</a>

South Dakota Scientists Invent Germ-Killing Wall Paint Friday, April 24, 2009 Someday soon, the paint on your wall may be able to kill disease-causing bacteria, as well as mold, fungi, viruses, and other harmful organisms. Scientists at the University of South Dakota have invented a new...

We are currently giving Ellie three CPT sessions x 20 mins each daily. Given that she doesn't cough during treatments, are the CPT sessions somewhat ineffective? There is a lot of talk about proper coughing techniques for optimum mucus clearance - given that you can't teach an infant how to...

For those of you with CF, has your height been stunted? For those of you with post-puberty CF children, do you believe they achieved their full height (i.e., as if they didn't have CF)? I'm curious if the slow weight gain translates to shorter stature in life as well....

How do you know if your little one is having sinus issues? Ellie doesn't sound congested when she breathes, but she sounds constricted when she sneezes. It's as if she is unable to expel a lot of air - does that make sense? Her next CF appt is mid-Feb...any ideas as to what they will look for to...

How many of you are adding it to your infant's bottle feedings? How much? Is there only one form of coconut oil to purchase? Was it ever recommended by your CF dietician?

How old were you or your little one when you were admitted into the hospital for the first time (CF-related)? How long was your/their first stay and why were you admitted? Are you ever given a PICC line and sent straight home (providing you know how to maintain one)...do CF doctors generally try...

Okay...because I'm still "new" to the CF community, I would appreciate info regarding nasal drainage and viscosity. Because secretions are thickened in CF lungs, is it safe to assume that nasal secretions are thickened also? I ask this because Ellie has a bit of a runny nose, but it appears like...

Hi all...I know there's another substance similar to Polycose, but I can't recall the name...anyone else? Also, have you had success with either or both?

Hi all - Ellie is still only at the 5% mark for weight-to-length. She's reaching all of her milestones and from a non-CF standpoint, she is tracking fine. The obvious issue is that she is soo long which decreases her over all BMI. My son (no CF) tracked almost exactly as she is, therefore, I...

I posted a while back about whether or not to boil breast pump parts after each use...something that would seem to be a hassle. I have since found steam sterilizer bags (99.9% bactericidal) made by Medela. You fill them with whatever accessories along with 3oz water and put one in the microwave...

How often do you clean your inhaler chamber? Ellie uses hers three times daily...I have to say that I seldom clean it....what do you suggest?

Ellie only BMs 1 - 2x daily...her stools have always been soft, then again, she's still only eating fortified breast milk. I've heard that CF babies pass stool more frequently if they are pancreatic insufficient (which she is). Every time we tell her dietician that she only has BMs 1-2x daily...

How many of you get it? Do you "believe" in it (i.e., that it really is worth it)? Ellie's CF doc is recommending that all family members should get one, but not her as she is too young. We never get the flu...and I've always been skeptical about the vaccine because I can't grasp that next...

How many of you get it? Do you "believe" in it (i.e., that it really is worth it)? Ellie's CF doc is recommending that all family members should get one, but not her as she is too young. We never get the flu...and I've always been skeptical about the vaccine because I can't grasp that next...

PTC Announces Data Showing That PTC124 Causes Statistically Significant Improvements in Chloride Channel Function in Cystic Fibrosis Patients I don't have the exact data as this was taken from an email update I signed up for.... PTC124 Highlighted in Multiple Presentations at North American...