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I thought id chime in. AM Xopenex Denufosol Pulmozyne and vest for 30 min. Advair Flonase Tobi when needed 330 xopenex when needed, 30 min vest and denufosol PM Same as morning minus flonase

I thought id chime in. <br />AM <br />Xopenex <br />Denufosol <br />Pulmozyne and vest for 30 min. <br />Advair <br />Flonase <br />Tobi when needed <br /> <br />330 xopenex when needed, 30 min vest and denufosol <br /> <br />PM <br />Same as morning minus flonase

I'm wondering if anyone has seen improvement with denufosol? My daughter started the trial in 09, and in a year and a half has had over a 20% drop in her pft's. My center has in no way attempted or addressed this issue with us (hence we are switching). I wanted to have her start the saline...

I'm wondering if anyone has seen improvement with denufosol? My daughter started the trial in 09, and in a year and a half has had over a 20% drop in her pft's. My center has in no way attempted or addressed this issue with us (hence we are switching). I wanted to have her start the saline...

I'm wondering if anyone has seen improvement with denufosol? My daughter started the trial in 09, and in a year and a half has had over a 20% drop in her pft's. My center has in no way attempted or addressed this issue with us (hence we are switching). I wanted to have her start the saline...

Evening all. I am wondering if anyone has any children doing the PTC 124 trial? I talked to a director today, and she said she technically wouldnt recommend it for anyone under 10, although they can do it at 6 (my daughter is 6 and a half). She explained quite a bit of what it entails to me...

Evening all. I am wondering if anyone has any children doing the PTC 124 trial? I talked to a director today, and she said she technically wouldnt recommend it for anyone under 10, although they can do it at 6 (my daughter is 6 and a half). She explained quite a bit of what it entails to me...

Evening all. I am wondering if anyone has any children doing the PTC 124 trial? I talked to a director today, and she said she technically wouldnt recommend it for anyone under 10, although they can do it at 6 (my daughter is 6 and a half). She explained quite a bit of what it entails to me...

Ahh ok thanks. I actually just reread my post, and now it seems a bit, well, I wouldn't reply to it. I'm basically wondering what do you do when your child wants a friend they can relate with? We come from a very small area, she is the first in our school to have the diagnosis. It has been a...

Ahh ok thanks. I actually just reread my post, and now it seems a bit, well, I wouldn't reply to it. I'm basically wondering what do you do when your child wants a friend they can relate with? We come from a very small area, she is the first in our school to have the diagnosis. It has been a...

Ahh ok thanks. I actually just reread my post, and now it seems a bit, well, I wouldn't reply to it. I'm basically wondering what do you do when your child wants a friend they can relate with? We come from a very small area, she is the first in our school to have the diagnosis. It has been a...

My 6 year old daughter has hit the point of "I'm the only one! No one else has cf!". So I think it would be lovely for her to be able to have a friend who does, someone who she can relate with. Would anyone happen to be interested? I've thought of pen pals, phone or even skype. Or is there...

My 6 year old daughter has hit the point of "I'm the only one! No one else has cf!". So I think it would be lovely for her to be able to have a friend who does, someone who she can relate with. Would anyone happen to be interested? I've thought of pen pals, phone or even skype. Or is there...

My 6 year old daughter has hit the point of "I'm the only one! No one else has cf!". So I think it would be lovely for her to be able to have a friend who does, someone who she can relate with. Would anyone happen to be interested? I've thought of pen pals, phone or even skype. Or is there...

I got the same news today also, after my daughter having an extremely rough 2 weeks. We have cultered it twice before, once when she was 1, and then again once when she was 3. It only took one round on cipro and tobi and we never saw it again. I've never seen her have the issues before though...

I got the same news today also, after my daughter having an extremely rough 2 weeks. We have cultered it twice before, once when she was 1, and then again once when she was 3. It only took one round on cipro and tobi and we never saw it again. I've never seen her have the issues before though...

I got the same news today also, after my daughter having an extremely rough 2 weeks. We have cultered it twice before, once when she was 1, and then again once when she was 3. It only took one round on cipro and tobi and we never saw it again. I've never seen her have the issues before though...

Wow.. we use the Hillrom for 8 hours at night, and my center just told me at the last visit that i wasnt supposed to go below 10 or above 16 (as i was questioning it). Interesting information! I am calling them about it. Thanks so much!

Wow.. we use the Hillrom for 8 hours at night, and my center just told me at the last visit that i wasnt supposed to go below 10 or above 16 (as i was questioning it). Interesting information! I am calling them about it. Thanks so much!

Wow.. we use the Hillrom for 8 hours at night, and my center just told me at the last visit that i wasnt supposed to go below 10 or above 16 (as i was questioning it). Interesting information! I am calling them about it. Thanks so much!