Improving lung Function

[MaryamsMommy]

Hi everyone,

I dont post much but I have a soon to be 11 yearold daughter with CF. Since Jan of this year she has had a rapid decrease in overall lung function. In the last 3 1/2 months she has been on 3 weeks of oral bactrim, 2 weeks of oral levequin and 1 week of oral steroids. She has also been on 3 weeks of IV vanco,Fortaz and Tobramyacin. Followed by 3 weeks after that 2 weeks of If meropenem and 1 week of IV steroids. And last almost a week of IV levequin and fortaz till the doctors decided we are dealing with a new baseline.

Her Fev1 went from a 87% in Mid Jan to Low 70s in Feb to 60s in March She now has an Fev 1 of 60% but can get up to 67% right after a bronchodialator. The doctors are now saying low to mid 60s is probably her new baseline..WHAT!!!! that quick? They said she also has some restrictive lung disease going on making her lungs a little smaller then they should be. She also put on 8 pounds since Jan and grew 2 inches. She is only in 20th% for BMI. But they think this growth might be the cause. basically her body grew and because of the restrictive lung disease on top of CF her lung function declined. Who knows. She is colonized with PA and cultures some other Bugs Hflu and Staph on and off and a few other weird ones here and there. On tobi and will be adding cayston on tobi off months as soon as insurance authorizes. It has been sugested to start Physical therapy for her to help expand her chest cavity improve posture and maybe get back some lung volume. Just wondering what anyone else has tried aside from regular exercise to help with PFTs for themselves or their children? Yoga? Ti Chi? Sorry for the spelling errors..lol to lazy to go back and spell check... Any imput will be great...

Karen

Mommy to Maryam almost 11 with CF.

 

[MaryamsMommy]

Hi everyone,

I dont post much but I have a soon to be 11 yearold daughter with CF. Since Jan of this year she has had a rapid decrease in overall lung function. In the last 3 1/2 months she has been on 3 weeks of oral bactrim, 2 weeks of oral levequin and 1 week of oral steroids. She has also been on 3 weeks of IV vanco,Fortaz and Tobramyacin. Followed by 3 weeks after that 2 weeks of If meropenem and 1 week of IV steroids. And last almost a week of IV levequin and fortaz till the doctors decided we are dealing with a new baseline.

Her Fev1 went from a 87% in Mid Jan to Low 70s in Feb to 60s in March She now has an Fev 1 of 60% but can get up to 67% right after a bronchodialator. The doctors are now saying low to mid 60s is probably her new baseline..WHAT!!!! that quick? They said she also has some restrictive lung disease going on making her lungs a little smaller then they should be. She also put on 8 pounds since Jan and grew 2 inches. She is only in 20th% for BMI. But they think this growth might be the cause. basically her body grew and because of the restrictive lung disease on top of CF her lung function declined. Who knows. She is colonized with PA and cultures some other Bugs Hflu and Staph on and off and a few other weird ones here and there. On tobi and will be adding cayston on tobi off months as soon as insurance authorizes. It has been sugested to start Physical therapy for her to help expand her chest cavity improve posture and maybe get back some lung volume. Just wondering what anyone else has tried aside from regular exercise to help with PFTs for themselves or their children? Yoga? Ti Chi? Sorry for the spelling errors..lol to lazy to go back and spell check... Any imput will be great...

Karen

Mommy to Maryam almost 11 with CF.

 

[MaryamsMommy]

Hi everyone,
<br />
<br />I dont post much but I have a soon to be 11 yearold daughter with CF. Since Jan of this year she has had a rapid decrease in overall lung function. In the last 3 1/2 months she has been on 3 weeks of oral bactrim, 2 weeks of oral levequin and 1 week of oral steroids. She has also been on 3 weeks of IV vanco,Fortaz and Tobramyacin. Followed by 3 weeks after that 2 weeks of If meropenem and 1 week of IV steroids. And last almost a week of IV levequin and fortaz till the doctors decided we are dealing with a new baseline.
<br />
<br />Her Fev1 went from a 87% in Mid Jan to Low 70s in Feb to 60s in March She now has an Fev 1 of 60% but can get up to 67% right after a bronchodialator. The doctors are now saying low to mid 60s is probably her new baseline..WHAT!!!! that quick? They said she also has some restrictive lung disease going on making her lungs a little smaller then they should be. She also put on 8 pounds since Jan and grew 2 inches. She is only in 20th% for BMI. But they think this growth might be the cause. basically her body grew and because of the restrictive lung disease on top of CF her lung function declined. Who knows. She is colonized with PA and cultures some other Bugs Hflu and Staph on and off and a few other weird ones here and there. On tobi and will be adding cayston on tobi off months as soon as insurance authorizes. It has been sugested to start Physical therapy for her to help expand her chest cavity improve posture and maybe get back some lung volume. Just wondering what anyone else has tried aside from regular exercise to help with PFTs for themselves or their children? Yoga? Ti Chi? Sorry for the spelling errors..lol to lazy to go back and spell check... Any imput will be great...
<br />
<br />Karen
<br />
<br />Mommy to Maryam almost 11 with CF.

 

[rubyroselee]

Hi Karen,

I'm so sorry to hear about your daughter's decline in PFT's. That happened very quickly too. Is she on Advair or Pulmozyme? If her PFT's are improving with a bronchodilator, then she most likely needs a long-acting steroid as well, like Advair. My small airway function incrased significantly with the addition of Advair. It really helps that inflammatory response we get in our lungs. The other option is the MWF Zithromax, which will also help with the inflammation as well. I had great experiences with adding these meds, and Pulmozyme. So hopefully if she's not on those it can be an option for her. Good luck!

 

[rubyroselee]

Hi Karen,

I'm so sorry to hear about your daughter's decline in PFT's. That happened very quickly too. Is she on Advair or Pulmozyme? If her PFT's are improving with a bronchodilator, then she most likely needs a long-acting steroid as well, like Advair. My small airway function incrased significantly with the addition of Advair. It really helps that inflammatory response we get in our lungs. The other option is the MWF Zithromax, which will also help with the inflammation as well. I had great experiences with adding these meds, and Pulmozyme. So hopefully if she's not on those it can be an option for her. Good luck!

 

[rubyroselee]

Hi Karen,
<br />
<br />I'm so sorry to hear about your daughter's decline in PFT's. That happened very quickly too. Is she on Advair or Pulmozyme? If her PFT's are improving with a bronchodilator, then she most likely needs a long-acting steroid as well, like Advair. My small airway function incrased significantly with the addition of Advair. It really helps that inflammatory response we get in our lungs. The other option is the MWF Zithromax, which will also help with the inflammation as well. I had great experiences with adding these meds, and Pulmozyme. So hopefully if she's not on those it can be an option for her. Good luck!

 

[MaryamsMommy]

Hi Leah,

Great sugestions but she is on all. She is on Albuterol 2-4 times a day Pulmozyme 2 xs a day Hypertonic saline 2-3 times a day Tobi and Yes she is on Advair and Zithromax M-W-F has been on all of them for years. She does have an improvement with the Bronciodialator but not the 15% to consider an asthma component. They think since she can correct to the 67% right after the albuterol that that is probably what we are looking at for the time being as a max. It just scares me because every visit her Fev1 is less then the one before without any improvement. She is due in clinic in 2 weeks Im just wondering what that will bring. At this point I want to stop any further decline. The bad thing is is we have yet to have a real cause.

Karen Mommy to Maryam almost 11 with CF

 

[MaryamsMommy]

Hi Leah,

Great sugestions but she is on all. She is on Albuterol 2-4 times a day Pulmozyme 2 xs a day Hypertonic saline 2-3 times a day Tobi and Yes she is on Advair and Zithromax M-W-F has been on all of them for years. She does have an improvement with the Bronciodialator but not the 15% to consider an asthma component. They think since she can correct to the 67% right after the albuterol that that is probably what we are looking at for the time being as a max. It just scares me because every visit her Fev1 is less then the one before without any improvement. She is due in clinic in 2 weeks Im just wondering what that will bring. At this point I want to stop any further decline. The bad thing is is we have yet to have a real cause.

Karen Mommy to Maryam almost 11 with CF

 

[MaryamsMommy]

Hi Leah,
<br />
<br /> Great sugestions but she is on all. She is on Albuterol 2-4 times a day Pulmozyme 2 xs a day Hypertonic saline 2-3 times a day Tobi and Yes she is on Advair and Zithromax M-W-F has been on all of them for years. She does have an improvement with the Bronciodialator but not the 15% to consider an asthma component. They think since she can correct to the 67% right after the albuterol that that is probably what we are looking at for the time being as a max. It just scares me because every visit her Fev1 is less then the one before without any improvement. She is due in clinic in 2 weeks Im just wondering what that will bring. At this point I want to stop any further decline. The bad thing is is we have yet to have a real cause.
<br />
<br />Karen Mommy to Maryam almost 11 with CF

 

[Ratatosk]

I'm assuming she uses a vest or cpt -- do you do the minnesota protocol on the vest -- different pressures and speeds and pausing to do huff coughing every 5 minutes.

 

[Ratatosk]

I'm assuming she uses a vest or cpt -- do you do the minnesota protocol on the vest -- different pressures and speeds and pausing to do huff coughing every 5 minutes.

 

[Ratatosk]

I'm assuming she uses a vest or cpt -- do you do the minnesota protocol on the vest -- different pressures and speeds and pausing to do huff coughing every 5 minutes.