Search results

Didn't care for it, either. Great to raise awareness, but these children look like they're on death's door and in agony. CF is not fun, but don't pity my child.

Didn't care for it, either. Great to raise awareness, but these children look like they're on death's door and in agony. CF is not fun, but don't pity my child.

I wouldn't inhale it, but I do use it for cleaning! <img src="i/expressions/face-icon-small-smile.gif" border="0"> See http://www.puregreen24.com/ - good stuff!

I wouldn't inhale it, but I do use it for cleaning! <img src="i/expressions/face-icon-small-smile.gif" border="0"> See http://www.puregreen24.com/ - good stuff!

DD takes it once daily. I'll have more on their site to find information regarding BID dosing...I briefly reviewed the site and didn't find that information anywhere. DD is almost four...perhaps not worth increased irritation risk in her smaller airways at this point...

DD takes it once daily. I'll have more on their site to find information regarding BID dosing...I briefly reviewed the site and didn't find that information anywhere. DD is almost four...perhaps not worth increased irritation risk in her smaller airways at this point...

I can't imagine how difficult this time must be. I'm so grateful that you will have the joy of your little one in your arms soon. My heart goes out to you.

I can't imagine how difficult this time must be. I'm so grateful that you will have the joy of your little one in your arms soon. My heart goes out to you.

When DD cultures PA, they'll advise a hospital admit for IV meds instead of an initial treatment with TOBI. What are others' thoughts?

When DD cultures PA, they'll advise a hospital admit for IV meds instead of an initial treatment with TOBI. What are others' thoughts?

Hi there...3.5 yr old daughter with CF. I'm on Facebook!

Hi there...3.5 yr old daughter with CF. I'm on Facebook!

Works great for DD...better than Pancrease and Creon. Creon was AWFUL.

Not worth it...

Not worth it...

Hi Katie - sorry for your stress!! In order to have CF you must have two copies of a CFTR gene mutation (i.e., can be the same mutation, can be two different mutations). If you are a CF gene carrier (or CFTR mutation carrier; i.e., any one of the the 1000+ mutations) then you do not have CF...

Hi Katie - sorry for your stress!! In order to have CF you must have two copies of a CFTR gene mutation (i.e., can be the same mutation, can be two different mutations). If you are a CF gene carrier (or CFTR mutation carrier; i.e., any one of the the 1000+ mutations) then you do not have CF...

I boil DD's nebs before each use...not taking the chance of bacterial growth. I use tap water as well...boil x 10 mins...

I boil DD's nebs before each use...not taking the chance of bacterial growth. I use tap water as well...boil x 10 mins...

With regard to pancreatic insufficiency vs sufficiency and life expectancy - I think it's fair to say that "one to two decades longer" correlates with better nutrition. Better nutrition = better overall health = greater ability to fight infection = better lung health. I don't think it's fair to...