Improving Lung Function in Child

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MaryamsMommy

New member
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.
 
M

MaryamsMommy

New member
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.
 
M

MaryamsMommy

New member
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.
 
M

mag6125

New member
Any activity is better than no activity. Growing up I was involved in tons of organized sports both in and out of school and that was very important. As soon as I graduated and stopped most of my activities I started getting sick a lot more and my pfts started dropping. Another good thing is playing an instrument in band, I played trumpet all through school starting in 6th grade and that is definitely a work out for your lungs.
 
M

mag6125

New member
Any activity is better than no activity. Growing up I was involved in tons of organized sports both in and out of school and that was very important. As soon as I graduated and stopped most of my activities I started getting sick a lot more and my pfts started dropping. Another good thing is playing an instrument in band, I played trumpet all through school starting in 6th grade and that is definitely a work out for your lungs.
 
M

mag6125

New member
Any activity is better than no activity. Growing up I was involved in tons of organized sports both in and out of school and that was very important. As soon as I graduated and stopped most of my activities I started getting sick a lot more and my pfts started dropping. Another good thing is playing an instrument in band, I played trumpet all through school starting in 6th grade and that is definitely a work out for your lungs.
 
M

Melissa75

Administrator
I was a very sports oriented kid, and radiologists always exclaim at how far down my torso my lungs extend. I don't know if that is related, but I will say there is a lot of benefit to exercise that works your core and builds your coughing muscles and posture, AND exercise that makes you pant and take deep breaths. My lung function has not improved since I have become a sports junkie again post dx, but my resting heart rate has improved a lot and I am sick less often.

Yoga, pilates, dance, rock climbing are great for the core. Dance, running and swimming are great for the heart/lungs. There are plenty other great sports. For me--my own quirk--I have to be with people and trying to "perfect" something...I am not so good with the DVDs in my living room. I like hanging with my gym acquaintances and my close friend/climbing buddy.

Yoga makes me cough up junk during the whole class so I do have to warn new people that they won't catch a cold from me. Cardio dance...I cough the stuff up while I am driving home.
 
M

Melissa75

Administrator
I was a very sports oriented kid, and radiologists always exclaim at how far down my torso my lungs extend. I don't know if that is related, but I will say there is a lot of benefit to exercise that works your core and builds your coughing muscles and posture, AND exercise that makes you pant and take deep breaths. My lung function has not improved since I have become a sports junkie again post dx, but my resting heart rate has improved a lot and I am sick less often.

Yoga, pilates, dance, rock climbing are great for the core. Dance, running and swimming are great for the heart/lungs. There are plenty other great sports. For me--my own quirk--I have to be with people and trying to "perfect" something...I am not so good with the DVDs in my living room. I like hanging with my gym acquaintances and my close friend/climbing buddy.

Yoga makes me cough up junk during the whole class so I do have to warn new people that they won't catch a cold from me. Cardio dance...I cough the stuff up while I am driving home.
 
M

Melissa75

Administrator
I was a very sports oriented kid, and radiologists always exclaim at how far down my torso my lungs extend. I don't know if that is related, but I will say there is a lot of benefit to exercise that works your core and builds your coughing muscles and posture, AND exercise that makes you pant and take deep breaths. My lung function has not improved since I have become a sports junkie again post dx, but my resting heart rate has improved a lot and I am sick less often.
<br />
<br />Yoga, pilates, dance, rock climbing are great for the core. Dance, running and swimming are great for the heart/lungs. There are plenty other great sports. For me--my own quirk--I have to be with people and trying to "perfect" something...I am not so good with the DVDs in my living room. I like hanging with my gym acquaintances and my close friend/climbing buddy.
<br />
<br />Yoga makes me cough up junk during the whole class so I do have to warn new people that they won't catch a cold from me. Cardio dance...I cough the stuff up while I am driving home.
 
M

mamaScarlett

Active member
As far as activity goes I've heard from a few docs that Pilates is great for lungs, breathing, opening your chest cavity, ribs etc. Of course it would be hard to get an 11 yr old into it.
I ditto the rock climbing, and horseback riding is SOOO good for lungs. (as long as its riding in the open air) Plus its involves kids emotionally which is just as helpful.

As far the lung function decline, I would not think that this is her new baseline. Something happened with her body this past 6 months for her to gain 8 lbs and grow 2 inches. It could have been related to lungs, or it could have been an 11 yr olds growth spurt. I know for me, some very weird things have happened when I've had changes to my body, especially hormonal changes. After I stopped breastfeeding my daughter something weird happened to my metabolism-I suddenly lost tons of weight and had a drastic decrease in my lung function for no apparent reason. It took about a year to nail it down and recover it.

I'd take whatever this is seriously, but I would not give in thinking this is her new baseline. Growth, pre teen hormones, so much can contribute to our lung health.
 
M

mamaScarlett

Active member
As far as activity goes I've heard from a few docs that Pilates is great for lungs, breathing, opening your chest cavity, ribs etc. Of course it would be hard to get an 11 yr old into it.
I ditto the rock climbing, and horseback riding is SOOO good for lungs. (as long as its riding in the open air) Plus its involves kids emotionally which is just as helpful.

As far the lung function decline, I would not think that this is her new baseline. Something happened with her body this past 6 months for her to gain 8 lbs and grow 2 inches. It could have been related to lungs, or it could have been an 11 yr olds growth spurt. I know for me, some very weird things have happened when I've had changes to my body, especially hormonal changes. After I stopped breastfeeding my daughter something weird happened to my metabolism-I suddenly lost tons of weight and had a drastic decrease in my lung function for no apparent reason. It took about a year to nail it down and recover it.

I'd take whatever this is seriously, but I would not give in thinking this is her new baseline. Growth, pre teen hormones, so much can contribute to our lung health.
 
M

mamaScarlett

Active member
As far as activity goes I've heard from a few docs that Pilates is great for lungs, breathing, opening your chest cavity, ribs etc. Of course it would be hard to get an 11 yr old into it.
<br />I ditto the rock climbing, and horseback riding is SOOO good for lungs. (as long as its riding in the open air) Plus its involves kids emotionally which is just as helpful.
<br />
<br />As far the lung function decline, I would not think that this is her new baseline. Something happened with her body this past 6 months for her to gain 8 lbs and grow 2 inches. It could have been related to lungs, or it could have been an 11 yr olds growth spurt. I know for me, some very weird things have happened when I've had changes to my body, especially hormonal changes. After I stopped breastfeeding my daughter something weird happened to my metabolism-I suddenly lost tons of weight and had a drastic decrease in my lung function for no apparent reason. It took about a year to nail it down and recover it.
<br />
<br />I'd take whatever this is seriously, but I would not give in thinking this is her new baseline. Growth, pre teen hormones, so much can contribute to our lung health.
 
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