How improtant is prevention in doing chest therapy

[Mommafirst]

Its very hard, I think, for some people to accept that this disease WILL eventually progress and that the only hope we have for our kids is to do as much preventative care as we can to minimize the impact of the increasing severity.

I found this site, it doesn't say anything we don't know or talk about. But it is pretty clear on why preventative respiratory care is important and what the standards are (twice a day, unless conjested, etc.).

<a target=_blank class=ftalternatingbarlinklarge href="http://www.uams.edu/pediatrics/cf/respiratory_therapy.asp">UAMS Department of Pediatrics, College of Medicine</a>

I'm not so sure that anything you can say will shake her into compliance. Especially if their doctor is pretty indifferent to it all. But I imagine for your own conscious and your care for the boy, you are willing to try whatever you can!!!

 

[lightNlife]

Prevention is huge. My parents were smart to make me play french horn all those years as a fun way to get my lung exercise. Although I didn't have many lung problems as a kid, keeping my elasticity up and working hard at having a good total lung volume went a long way I'm sure in keeping me as healthy as possible.

Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.

 

[lightNlife]

Prevention is huge. My parents were smart to make me play french horn all those years as a fun way to get my lung exercise. Although I didn't have many lung problems as a kid, keeping my elasticity up and working hard at having a good total lung volume went a long way I'm sure in keeping me as healthy as possible.

Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.

 

[lightNlife]

Prevention is huge. My parents were smart to make me play french horn all those years as a fun way to get my lung exercise. Although I didn't have many lung problems as a kid, keeping my elasticity up and working hard at having a good total lung volume went a long way I'm sure in keeping me as healthy as possible.

Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>
Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.</end quote></div>

Terri & I spoke about this a bit before she posted. It is so hard to sit back and just let it happen. It some ways she wants to leave alone so not "if", but "when" the child gets sick it will be obvious, but sadly the child is the one getting hurt and the parent may/may not learn. It is the womans kid and her responsibility, but that doesnt mean Terri shouldnt at least try. If for no other reason to say that someone tried~ We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. OH TO BE ON THE OUTSIDE......

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>
Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.</end quote></div>

Terri & I spoke about this a bit before she posted. It is so hard to sit back and just let it happen. It some ways she wants to leave alone so not "if", but "when" the child gets sick it will be obvious, but sadly the child is the one getting hurt and the parent may/may not learn. It is the womans kid and her responsibility, but that doesnt mean Terri shouldnt at least try. If for no other reason to say that someone tried~ We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. OH TO BE ON THE OUTSIDE......

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>
Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.</end quote></div>

Terri & I spoke about this a bit before she posted. It is so hard to sit back and just let it happen. It some ways she wants to leave alone so not "if", but "when" the child gets sick it will be obvious, but sadly the child is the one getting hurt and the parent may/may not learn. It is the womans kid and her responsibility, but that doesnt mean Terri shouldnt at least try. If for no other reason to say that someone tried~ We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. OH TO BE ON THE OUTSIDE......

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.</end quote></div>

Terri & I spoke about this a bit before she posted. It is so hard to sit back and just let it happen. It some ways she wants to leave alone so not "if", but "when" the child gets sick it will be obvious, but sadly the child is the one getting hurt and the parent may/may not learn. It is the womans kid and her responsibility, but that doesnt mean Terri shouldnt at least try. If for no other reason to say that someone tried~ We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. OH TO BE ON THE OUTSIDE......</end quote></div>

Hah... I wish it was her OWN health. So you could say "fine" and let it happen on its own. Then when she got sick you could point and laugh and go TOLD YOU SO!!! But you're right, it's the kid... it sucks.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.</end quote></div>

Terri & I spoke about this a bit before she posted. It is so hard to sit back and just let it happen. It some ways she wants to leave alone so not "if", but "when" the child gets sick it will be obvious, but sadly the child is the one getting hurt and the parent may/may not learn. It is the womans kid and her responsibility, but that doesnt mean Terri shouldnt at least try. If for no other reason to say that someone tried~ We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. OH TO BE ON THE OUTSIDE......</end quote></div>

Hah... I wish it was her OWN health. So you could say "fine" and let it happen on its own. Then when she got sick you could point and laugh and go TOLD YOU SO!!! But you're right, it's the kid... it sucks.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

Unfortunately, people are going to do what they want to do. You cannot force another person to chance their attitudes. No matter how much convincing evidence people are presented with, they won't be persuaded. Let the woman stew in her own juices--it's her kid, and her responsibility to work with the doctors to get the kid the right treatments.</end quote></div>

Terri & I spoke about this a bit before she posted. It is so hard to sit back and just let it happen. It some ways she wants to leave alone so not "if", but "when" the child gets sick it will be obvious, but sadly the child is the one getting hurt and the parent may/may not learn. It is the womans kid and her responsibility, but that doesnt mean Terri shouldnt at least try. If for no other reason to say that someone tried~ We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. OH TO BE ON THE OUTSIDE......</end quote></div>

Hah... I wish it was her OWN health. So you could say "fine" and let it happen on its own. Then when she got sick you could point and laugh and go TOLD YOU SO!!! But you're right, it's the kid... it sucks.

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

...We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. </end quote></div>

When we went to the local CF clinic the first few times, they seemed shocked we did CPT and nebs on DS. In fact they were very concerned he was on tobi and albuterol/atrovent. I felt at times if they were trying to talk us out of it.

You can say you tried and leave it at that -- some people just don't get it, nor do they want to hear it. I've been in similar situations and have felt sick to my stomach knowing that someone's child isn't getting proper care or isn't getting tested -- prime example is a lady who works in a different department who has a son with bowel & digestive issues, frequent infections, asthma... And the peds doctor suggested having him tested for "cerebral fibrosis" as my moronic coworker called it -- she and her husband stormed out of the clinic and refused to have testing because their "son isn't stupid". Sigh...

Or another time, on another site a mom of a CFers was complaining how she broke her arm and therefore her kid didn't get CPT for several months and was all congested, got sick. Hello? You have TWO arms.

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

...We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. </end quote></div>

When we went to the local CF clinic the first few times, they seemed shocked we did CPT and nebs on DS. In fact they were very concerned he was on tobi and albuterol/atrovent. I felt at times if they were trying to talk us out of it.

You can say you tried and leave it at that -- some people just don't get it, nor do they want to hear it. I've been in similar situations and have felt sick to my stomach knowing that someone's child isn't getting proper care or isn't getting tested -- prime example is a lady who works in a different department who has a son with bowel & digestive issues, frequent infections, asthma... And the peds doctor suggested having him tested for "cerebral fibrosis" as my moronic coworker called it -- she and her husband stormed out of the clinic and refused to have testing because their "son isn't stupid". Sigh...

Or another time, on another site a mom of a CFers was complaining how she broke her arm and therefore her kid didn't get CPT for several months and was all congested, got sick. Hello? You have TWO arms.

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>

...We dont know if the doctor is saying dont do therapy, do therapy, do it once do it twice OR if no matter what the doctor recommends the parent is just does what they want. </end quote></div>

When we went to the local CF clinic the first few times, they seemed shocked we did CPT and nebs on DS. In fact they were very concerned he was on tobi and albuterol/atrovent. I felt at times if they were trying to talk us out of it.

You can say you tried and leave it at that -- some people just don't get it, nor do they want to hear it. I've been in similar situations and have felt sick to my stomach knowing that someone's child isn't getting proper care or isn't getting tested -- prime example is a lady who works in a different department who has a son with bowel & digestive issues, frequent infections, asthma... And the peds doctor suggested having him tested for "cerebral fibrosis" as my moronic coworker called it -- she and her husband stormed out of the clinic and refused to have testing because their "son isn't stupid". Sigh...

Or another time, on another site a mom of a CFers was complaining how she broke her arm and therefore her kid didn't get CPT for several months and was all congested, got sick. Hello? You have TWO arms.

 

[Uli]

I think its a difficult question because everyone and everyones cf is different.
I was diagnosed with 6 months but did no therapy except some enzyms and when I got a cold oral antibiotics until I got 12. At that time I visited a cf-clinic for the first time. I got oral antibiotics to be taken every day and was told to inhale and do some breathing therapy ( at that time "beating" the chest and back with the hands). As I didn´t like that very much<img src="i/expressions/face-icon-small-happy.gif" border="0"> I did in the long run only take my enzyms and the oral antibiotics.
Later in my early twenties i got my first IV, which I did quite regularly once a year from there on. I remember one e time when inhaling tobramycin for 3 weeks, but otherwise I did not inhale anything.
At about 33/34 I started inhaling powder/spray two times a day and got massages about once a week. Sometimes I inhaled Colistin in case of infection and once I tried tobi.
Until last year I did get around with that without major problems, but now the upper lung parts are chronical infected and I do IV nearly all the time now because I don´t want them to be "taken out" wit an operation...

I don´t know, if my lungs will have been better for some more weeks/months or even years if I had done more therapy, but I for me personally am glad that I lived a nearly normal life all the years before with working fulltime for over 20 years and lots of vacations in different countries without loosing many hours a day for therapy...
I had friends who died -younger than I am now- because of accidents or cancer and did not do half the things I did.
Sometimes I think who knows if my lungs will not have been worse with inhaling lots of stuff all the time because they would have got used to it and therefore the medications would not have helped anymore in case of an infection...

Its just my opinion and I don´t want to offend anybody but I´m convinced it was the right way for me.

Uli,44,Germany

 

[Uli]

I think its a difficult question because everyone and everyones cf is different.
I was diagnosed with 6 months but did no therapy except some enzyms and when I got a cold oral antibiotics until I got 12. At that time I visited a cf-clinic for the first time. I got oral antibiotics to be taken every day and was told to inhale and do some breathing therapy ( at that time "beating" the chest and back with the hands). As I didn´t like that very much<img src="i/expressions/face-icon-small-happy.gif" border="0"> I did in the long run only take my enzyms and the oral antibiotics.
Later in my early twenties i got my first IV, which I did quite regularly once a year from there on. I remember one e time when inhaling tobramycin for 3 weeks, but otherwise I did not inhale anything.
At about 33/34 I started inhaling powder/spray two times a day and got massages about once a week. Sometimes I inhaled Colistin in case of infection and once I tried tobi.
Until last year I did get around with that without major problems, but now the upper lung parts are chronical infected and I do IV nearly all the time now because I don´t want them to be "taken out" wit an operation...

I don´t know, if my lungs will have been better for some more weeks/months or even years if I had done more therapy, but I for me personally am glad that I lived a nearly normal life all the years before with working fulltime for over 20 years and lots of vacations in different countries without loosing many hours a day for therapy...
I had friends who died -younger than I am now- because of accidents or cancer and did not do half the things I did.
Sometimes I think who knows if my lungs will not have been worse with inhaling lots of stuff all the time because they would have got used to it and therefore the medications would not have helped anymore in case of an infection...

Its just my opinion and I don´t want to offend anybody but I´m convinced it was the right way for me.

Uli,44,Germany

 

[Uli]

I think its a difficult question because everyone and everyones cf is different.
I was diagnosed with 6 months but did no therapy except some enzyms and when I got a cold oral antibiotics until I got 12. At that time I visited a cf-clinic for the first time. I got oral antibiotics to be taken every day and was told to inhale and do some breathing therapy ( at that time "beating" the chest and back with the hands). As I didn´t like that very much<img src="i/expressions/face-icon-small-happy.gif" border="0"> I did in the long run only take my enzyms and the oral antibiotics.
Later in my early twenties i got my first IV, which I did quite regularly once a year from there on. I remember one e time when inhaling tobramycin for 3 weeks, but otherwise I did not inhale anything.
At about 33/34 I started inhaling powder/spray two times a day and got massages about once a week. Sometimes I inhaled Colistin in case of infection and once I tried tobi.
Until last year I did get around with that without major problems, but now the upper lung parts are chronical infected and I do IV nearly all the time now because I don´t want them to be "taken out" wit an operation...

I don´t know, if my lungs will have been better for some more weeks/months or even years if I had done more therapy, but I for me personally am glad that I lived a nearly normal life all the years before with working fulltime for over 20 years and lots of vacations in different countries without loosing many hours a day for therapy...
I had friends who died -younger than I am now- because of accidents or cancer and did not do half the things I did.
Sometimes I think who knows if my lungs will not have been worse with inhaling lots of stuff all the time because they would have got used to it and therefore the medications would not have helped anymore in case of an infection...

Its just my opinion and I don´t want to offend anybody but I´m convinced it was the right way for me.

Uli,44,Germany

 

[hopesiris]

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[hopesiris]

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[hopesiris]

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[kayleesgrandma]

Thanks everyone, I am going to copy all these replys, and show her, hopefully she will read them. Heather--that link is excellent! Thanks <img src="i/expressions/heart.gif" border="0">