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Denufosol. It was well along in the trial process (phase III) at the time it was scrapped. It was intended to work by activating an alternative chloride channel to help make up for the nonfunctional cftr. It was not mutation specific like the vertex drugs and ataluren- you can find more info...

Denufosol. It was well along in the trial process (phase III) at the time it was scrapped. It was intended to work by activating an alternative chloride channel to help make up for the nonfunctional cftr. It was not mutation specific like the vertex drugs and ataluren- you can find more info...

Thanks for clarifying Jonathan. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thanks for clarifying Jonathan. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Havoc- all children are naturally belly breathers, as in the way they should be breathing? Or that shallow breathing up in their chest? They were trying to teach Emily to breathe where she could feel it down lower (in her 'belly'), NOT up in her upper chest, using her shoulders and neck, etc...

Havoc- all children are naturally belly breathers, as in the way they should be breathing? Or that shallow breathing up in their chest? They were trying to teach Emily to breathe where she could feel it down lower (in her 'belly'), NOT up in her upper chest, using her shoulders and neck, etc...

I assume you are asking how our kids were dx'ed, given the forum you posted in? We knew 'something' was wrong with my dd from the time she was 3 and essentially stopped growing and gaining weight and it was a wild goose chase for years trying to figure out what was wrong with her. Finally she...

I assume you are asking how our kids were dx'ed, given the forum you posted in? We knew 'something' was wrong with my dd from the time she was 3 and essentially stopped growing and gaining weight and it was a wild goose chase for years trying to figure out what was wrong with her. Finally she...

At our hospital's website, there is an online appt request form where you can give your info and state your preferences re which dr you would like to see, etc. It asks you who the referring physician is and if they have sent in the required paperwork. Pulmonary is one of the departments on this...

At our hospital's website, there is an online appt request form where you can give your info and state your preferences re which dr you would like to see, etc. It asks you who the referring physician is and if they have sent in the required paperwork. Pulmonary is one of the departments on this...

Anomie~ belly breathing in terms of what you WANT to see is breathing using your diaphragm, which is what I was talking about above in my post re the therapy my dd had.

Anomie~ belly breathing in terms of what you WANT to see is breathing using your diaphragm, which is what I was talking about above in my post re the therapy my dd had.

Emily needed some therapy to help her with learning to breathe with her diaphragm vs up in her chest. Her problems are nothing like what some of you are describing here, but she is only 10 years old. It was not complicated at all (she is developmentally disabled with cognitive level of a 6yr old...

Emily needed some therapy to help her with learning to breathe with her diaphragm vs up in her chest. Her problems are nothing like what some of you are describing here, but she is only 10 years old. It was not complicated at all (she is developmentally disabled with cognitive level of a 6yr old...

That is interesting. I think this concept bears out more research, but the extremely small number of study participants limits the value of the study. For example, were the participants chosen from multiple centers with various approaches to care- or all from the same center, where approach to...

That is interesting. I think this concept bears out more research, but the extremely small number of study participants limits the value of the study. For example, were the participants chosen from multiple centers with various approaches to care- or all from the same center, where approach to...

It makes me crazy, because it flies in the face of the whole 'recessive disease' thing where one mutation should be completely suppressed by the healthy gene, but it is what it is- CF carriers can absolutely be symptomatic. It's still an evolving dx- enter CRMS for example. DF508 carriers are...

It makes me crazy, because it flies in the face of the whole 'recessive disease' thing where one mutation should be completely suppressed by the healthy gene, but it is what it is- CF carriers can absolutely be symptomatic. It's still an evolving dx- enter CRMS for example. DF508 carriers are...

I agree with talking to your cf team at your child's next clinic as getting an appt is not, in the vast majority of cases, as simple as calling them up and asking for one. We needed to get a referral for my son (now dx'ed with CRMS) to even be seen there for an asthma consultation- reputable...

I agree with talking to your cf team at your child's next clinic as getting an appt is not, in the vast majority of cases, as simple as calling them up and asking for one. We needed to get a referral for my son (now dx'ed with CRMS) to even be seen there for an asthma consultation- reputable...