Preventative measures for lung health

[auntcob]

Hi--Just wondering if any of your children basically do nothing to keep their lungs healthy/prevent future problems? My son, dx in Feb. at 14 years, does nothing for his lungs except pulmicort, ventolin as needed. We do manual CPT when he has an URI.

His FEV1 are usually 80-82%. I took him to the pulmonologist in April to see if his lack of stamina was related to lung functioning. She said she did not think so after doing another PFT. Her recommendation was for him to drink caffeine at lunch time!

So--after all that, my question is: Even if the lungs are "healthy,"----his pul said 80-100% is good--do you do treatments, vest, etc.. as a preventative measure? And at what point did you have to start using a vest or percussor, etc.

Thanks,

Chris

 

[auntcob]

Hi--Just wondering if any of your children basically do nothing to keep their lungs healthy/prevent future problems? My son, dx in Feb. at 14 years, does nothing for his lungs except pulmicort, ventolin as needed. We do manual CPT when he has an URI.

His FEV1 are usually 80-82%. I took him to the pulmonologist in April to see if his lack of stamina was related to lung functioning. She said she did not think so after doing another PFT. Her recommendation was for him to drink caffeine at lunch time!

So--after all that, my question is: Even if the lungs are "healthy,"----his pul said 80-100% is good--do you do treatments, vest, etc.. as a preventative measure? And at what point did you have to start using a vest or percussor, etc.

Thanks,

Chris

 

[auntcob]

Hi--Just wondering if any of your children basically do nothing to keep their lungs healthy/prevent future problems? My son, dx in Feb. at 14 years, does nothing for his lungs except pulmicort, ventolin as needed. We do manual CPT when he has an URI.
<br />
<br />His FEV1 are usually 80-82%. I took him to the pulmonologist in April to see if his lack of stamina was related to lung functioning. She said she did not think so after doing another PFT. Her recommendation was for him to drink caffeine at lunch time!
<br />
<br />So--after all that, my question is: Even if the lungs are "healthy,"----his pul said 80-100% is good--do you do treatments, vest, etc.. as a preventative measure? And at what point did you have to start using a vest or percussor, etc.
<br />
<br />Thanks,
<br />
<br />Chris

 

[Ratatosk]

We started doing CPT along with albuterol/atrovent nebs, 4 times a day for 15-20 minutes when DS was about a week old.

When I went back to work dropped down to 3x a day unless ds had an URI, then we increased it to 4-6.

He started tobi when he was 3 months old after culturing pseudmonas. He was put on Pulomozyme 1x a day when he was 2 1/2 and received his vest when he was 3 years old.

I do manual CPT for 20 minutes each morning before school/work. When he gets home he does 30 minutes of vest with nebs. And again before bed for 30 minutes.

Our primary CF doctor in the City stressed proper lung care from day 1. Our local clinic doesn't -- only if there are symptoms the difference in people wcf who go to the local clinic vs. the City is frightening. Children much younger that DS with chronic coughs, snotty noses, frequent hospitalizations vs. children whom you couldn't tell had CF.

 

[Ratatosk]

We started doing CPT along with albuterol/atrovent nebs, 4 times a day for 15-20 minutes when DS was about a week old.

When I went back to work dropped down to 3x a day unless ds had an URI, then we increased it to 4-6.

He started tobi when he was 3 months old after culturing pseudmonas. He was put on Pulomozyme 1x a day when he was 2 1/2 and received his vest when he was 3 years old.

I do manual CPT for 20 minutes each morning before school/work. When he gets home he does 30 minutes of vest with nebs. And again before bed for 30 minutes.

Our primary CF doctor in the City stressed proper lung care from day 1. Our local clinic doesn't -- only if there are symptoms the difference in people wcf who go to the local clinic vs. the City is frightening. Children much younger that DS with chronic coughs, snotty noses, frequent hospitalizations vs. children whom you couldn't tell had CF.

 

[Ratatosk]

We started doing CPT along with albuterol/atrovent nebs, 4 times a day for 15-20 minutes when DS was about a week old.
<br />
<br />When I went back to work dropped down to 3x a day unless ds had an URI, then we increased it to 4-6.
<br />
<br />He started tobi when he was 3 months old after culturing pseudmonas. He was put on Pulomozyme 1x a day when he was 2 1/2 and received his vest when he was 3 years old.
<br />
<br />I do manual CPT for 20 minutes each morning before school/work. When he gets home he does 30 minutes of vest with nebs. And again before bed for 30 minutes.
<br />
<br />Our primary CF doctor in the City stressed proper lung care from day 1. Our local clinic doesn't -- only if there are symptoms the difference in people wcf who go to the local clinic vs. the City is frightening. Children much younger that DS with chronic coughs, snotty noses, frequent hospitalizations vs. children whom you couldn't tell had CF.

 

[ktsmom]

Yikes, the response by the pulmonologist really bothers me! IMHO there is every reason to try to improve your son's PFTS! It makes me crazy when it appears that a care provider has adopted the "that's what people with CF are like" attitude.

We do what I would consider a full regimen for preventive lung health, even though the only real sign of any lung involvement for my daughter was culturing PA once (upon diagnosis at age 3). Bronchodilator, Denufosol, Pulmozyme, TOBI, Vest. We hope to keep her lungs as healthy as possible.

I hope you get some other responses. I've always understood the general line of thinking to be that lung damage is happening, whether it is obvious or not. Take care!

 

[ktsmom]

Yikes, the response by the pulmonologist really bothers me! IMHO there is every reason to try to improve your son's PFTS! It makes me crazy when it appears that a care provider has adopted the "that's what people with CF are like" attitude.

We do what I would consider a full regimen for preventive lung health, even though the only real sign of any lung involvement for my daughter was culturing PA once (upon diagnosis at age 3). Bronchodilator, Denufosol, Pulmozyme, TOBI, Vest. We hope to keep her lungs as healthy as possible.

I hope you get some other responses. I've always understood the general line of thinking to be that lung damage is happening, whether it is obvious or not. Take care!

 

[ktsmom]

Yikes, the response by the pulmonologist really bothers me! IMHO there is every reason to try to improve your son's PFTS! It makes me crazy when it appears that a care provider has adopted the "that's what people with CF are like" attitude.
<br />
<br />We do what I would consider a full regimen for preventive lung health, even though the only real sign of any lung involvement for my daughter was culturing PA once (upon diagnosis at age 3). Bronchodilator, Denufosol, Pulmozyme, TOBI, Vest. We hope to keep her lungs as healthy as possible.
<br />
<br />I hope you get some other responses. I've always understood the general line of thinking to be that lung damage is happening, whether it is obvious or not. Take care!

 

[Ratatosk]

Yikes, I missed the caffeine comment! IMO, that' is INSANE!

I agree with Dana! Sounds as if your doctor is too complacent. We had a similar experience with DS when he was a baby. The local CF doctor told us "it's what they do, they cough". The kid had bronchitis and could've ended up back in the hospital.

Obviously based on those PFT results and lack of energy, your son's lungs are affected and therefore he should be doing CPT/vest to get things moving. I assume they did a throat/sputum culture at this appoitnment to see what he's growing..

 

[Ratatosk]

Yikes, I missed the caffeine comment! IMO, that' is INSANE!

I agree with Dana! Sounds as if your doctor is too complacent. We had a similar experience with DS when he was a baby. The local CF doctor told us "it's what they do, they cough". The kid had bronchitis and could've ended up back in the hospital.

Obviously based on those PFT results and lack of energy, your son's lungs are affected and therefore he should be doing CPT/vest to get things moving. I assume they did a throat/sputum culture at this appoitnment to see what he's growing..

 

[Ratatosk]

Yikes, I missed the caffeine comment! IMO, that' is INSANE!
<br />
<br />I agree with Dana! Sounds as if your doctor is too complacent. We had a similar experience with DS when he was a baby. The local CF doctor told us "it's what they do, they cough". The kid had bronchitis and could've ended up back in the hospital.
<br />
<br />Obviously based on those PFT results and lack of energy, your son's lungs are affected and therefore he should be doing CPT/vest to get things moving. I assume they did a throat/sputum culture at this appoitnment to see what he's growing..

 

[Mommafirst]

Is your pulm part of an accredited CF center? With CF its all about prolonging healthy lungs, and that means doing treatments even if their pfts are well over 100%. We do the vest twice a day, albuterol (2x) and pulmozyme (1x) and I would say that ours is a very light preventative care load.

 

[Mommafirst]

Is your pulm part of an accredited CF center? With CF its all about prolonging healthy lungs, and that means doing treatments even if their pfts are well over 100%. We do the vest twice a day, albuterol (2x) and pulmozyme (1x) and I would say that ours is a very light preventative care load.

 

[Mommafirst]

Is your pulm part of an accredited CF center? With CF its all about prolonging healthy lungs, and that means doing treatments even if their pfts are well over 100%. We do the vest twice a day, albuterol (2x) and pulmozyme (1x) and I would say that ours is a very light preventative care load.
<br />
<br />

 

[hmw]

I really have a hard time wrapping my head around this. According to your posts, part of why he was dx'ed was due to his pft's and what his chest x-ray looked like: this indicates lung involvement. No lung involvement would indicate a normal x-ray and pft's a lot closer to 100%. There is just no getting around the physical evidence here that he does have lung involvement.

The CFF's goal for pediatric pft's is 98%. Several CF centers around the country have averages approaching or even slightly over 100%. To not be addressing lung involvement is, IMO, irresponsible and complacent on the part of a dr recommending this kind of tx. It is NOT THE STANDARD OF CARE in cf to ignore preventative care regardless of what pft's may be. It's always the goal to get them as high as possible and then keep them that way.

eta> as Sandra's post reminds me, I don't mean that I haven't heard of individual drs/centers having such a laid back or reactive approach, but it's not what the majority of drs that are experts in treating CF *and have the healthiest CF patients to show for it* recommend.

Yeah, a couple articles out there have indicated caffeine has a mild bronchodilating effect; you may have come across them online and you may find they help your son. But they are NOT a substitute for real care. And getting your son dependent on caffeine as a young teenager just seems like a bad idea all the way around.

Preventative care is the backbone of treating CF... you want to keep damage from occurring, not only be in 'damage control' mode during times of infection. You want to keep the lungs in optimal condition to avoid infection. Argh... I am getting worked up about this and should probably stop. I have seen my daughter (who has a much higher fev1 BTW), and too many other kids here, go through too much, to be able to read about a doctor make such irresponsible recommendations and remain calm about it.

I figured I'd add that Emily had pft's consistently in the low 90's after being dx'ed and just using a bronchodilator and daily vest. Upon further optimizing her therapy, it's gone up to WELL OVER 100%. What would I choose- a 'healthy' low 90's, or a 'healthy' over 100%? When the dr explains to me that the average person with cf loses a couple percentage points every year as they get older, it's a no-brainer- those percentage points gained now will eventually translate to years of life gained later.

I will also add that even with her great pft's, that when she gets sick, she really gets sick- and she has damage on her chest xray that wasn't there a couple years ago. So preventative care is absolutely, positively essential for her. I don't like to think about what we could be seeing otherwise! It's clear that while it's time consuming and takes over our life way more than what we want, it is worth it.

 

[hmw]

I really have a hard time wrapping my head around this. According to your posts, part of why he was dx'ed was due to his pft's and what his chest x-ray looked like: this indicates lung involvement. No lung involvement would indicate a normal x-ray and pft's a lot closer to 100%. There is just no getting around the physical evidence here that he does have lung involvement.

The CFF's goal for pediatric pft's is 98%. Several CF centers around the country have averages approaching or even slightly over 100%. To not be addressing lung involvement is, IMO, irresponsible and complacent on the part of a dr recommending this kind of tx. It is NOT THE STANDARD OF CARE in cf to ignore preventative care regardless of what pft's may be. It's always the goal to get them as high as possible and then keep them that way.

eta> as Sandra's post reminds me, I don't mean that I haven't heard of individual drs/centers having such a laid back or reactive approach, but it's not what the majority of drs that are experts in treating CF *and have the healthiest CF patients to show for it* recommend.

Yeah, a couple articles out there have indicated caffeine has a mild bronchodilating effect; you may have come across them online and you may find they help your son. But they are NOT a substitute for real care. And getting your son dependent on caffeine as a young teenager just seems like a bad idea all the way around.

Preventative care is the backbone of treating CF... you want to keep damage from occurring, not only be in 'damage control' mode during times of infection. You want to keep the lungs in optimal condition to avoid infection. Argh... I am getting worked up about this and should probably stop. I have seen my daughter (who has a much higher fev1 BTW), and too many other kids here, go through too much, to be able to read about a doctor make such irresponsible recommendations and remain calm about it.

I figured I'd add that Emily had pft's consistently in the low 90's after being dx'ed and just using a bronchodilator and daily vest. Upon further optimizing her therapy, it's gone up to WELL OVER 100%. What would I choose- a 'healthy' low 90's, or a 'healthy' over 100%? When the dr explains to me that the average person with cf loses a couple percentage points every year as they get older, it's a no-brainer- those percentage points gained now will eventually translate to years of life gained later.

I will also add that even with her great pft's, that when she gets sick, she really gets sick- and she has damage on her chest xray that wasn't there a couple years ago. So preventative care is absolutely, positively essential for her. I don't like to think about what we could be seeing otherwise! It's clear that while it's time consuming and takes over our life way more than what we want, it is worth it.

 

[hmw]

I really have a hard time wrapping my head around this. According to your posts, part of why he was dx'ed was due to his pft's and what his chest x-ray looked like: this indicates lung involvement. No lung involvement would indicate a normal x-ray and pft's a lot closer to 100%. There is just no getting around the physical evidence here that he does have lung involvement.
<br />
<br />The CFF's goal for pediatric pft's is 98%. Several CF centers around the country have averages approaching or even slightly over 100%. To not be addressing lung involvement is, IMO, irresponsible and complacent on the part of a dr recommending this kind of tx. It is NOT THE STANDARD OF CARE in cf to ignore preventative care regardless of what pft's may be. It's always the goal to get them as high as possible and then keep them that way.
<br />
<br />eta> as Sandra's post reminds me, I don't mean that I haven't heard of individual drs/centers having such a laid back or reactive approach, but it's not what the majority of drs that are experts in treating CF *and have the healthiest CF patients to show for it* recommend.
<br />
<br />Yeah, a couple articles out there have indicated caffeine has a mild bronchodilating effect; you may have come across them online and you may find they help your son. But they are NOT a substitute for real care. And getting your son dependent on caffeine as a young teenager just seems like a bad idea all the way around.
<br />
<br />Preventative care is the backbone of treating CF... you want to keep damage from occurring, not only be in 'damage control' mode during times of infection. You want to keep the lungs in optimal condition to avoid infection. Argh... I am getting worked up about this and should probably stop. I have seen my daughter (who has a much higher fev1 BTW), and too many other kids here, go through too much, to be able to read about a doctor make such irresponsible recommendations and remain calm about it.
<br />
<br />I figured I'd add that Emily had pft's consistently in the low 90's after being dx'ed and just using a bronchodilator and daily vest. Upon further optimizing her therapy, it's gone up to WELL OVER 100%. What would I choose- a 'healthy' low 90's, or a 'healthy' over 100%? When the dr explains to me that the average person with cf loses a couple percentage points every year as they get older, it's a no-brainer- those percentage points gained now will eventually translate to years of life gained later.
<br />
<br />I will also add that even with her great pft's, that when she gets sick, she really gets sick- and she has damage on her chest xray that wasn't there a couple years ago. So preventative care is absolutely, positively essential for her. I don't like to think about what we could be seeing otherwise! It's clear that while it's time consuming and takes over our life way more than what we want, it is worth it.

 

[Melissa75]

Chris,
In addition to what others are saying, I think it is very important and beneficial to make sure your son does a lot of aerobic exercise.
If he already does lots of sports, make sure he keeps it up, and does modified workouts when he is sick or on the rebound.
If he doesn't do a lot of sports, have him start slow and work up to more. Hydrate and rest too.
Several years ago, I was tired and out of breath walking a block. Although my PFTs are worse now than then, I recently ran four miles. Plus I am having fewer exacerbations. Your son's fitness level/cardiovascular health can strongly influence how he feels--not to mention provide major (and enjoyable) mucus clearance.

 

[Melissa75]

Chris,
In addition to what others are saying, I think it is very important and beneficial to make sure your son does a lot of aerobic exercise.
If he already does lots of sports, make sure he keeps it up, and does modified workouts when he is sick or on the rebound.
If he doesn't do a lot of sports, have him start slow and work up to more. Hydrate and rest too.
Several years ago, I was tired and out of breath walking a block. Although my PFTs are worse now than then, I recently ran four miles. Plus I am having fewer exacerbations. Your son's fitness level/cardiovascular health can strongly influence how he feels--not to mention provide major (and enjoyable) mucus clearance.