How improtant is prevention in doing chest therapy

[kayleesgrandma]

I know someone I met here in town with a young child that has cf. It is "mild" at this time. The mother does the vest only once a day, and that is late at night when the child has a bath and is getting ready for bed. Sometimes she even misses a day. How bad is that for the child? I don't want to say anything without making sure it is really the wrong thing to be doing. The little boy is 4 and he now seems to have the chunky stuff in his throat, like he needs to cough. He never seemed to have that before. I have mentioned to the mother before that it is important to do preventative therapy so he doesn't get worse. Her answer is that "she must be doing something right, because he hasn't gotten sick yet!" I don't have the right to say much to the mother, but you know me, I am always opinionated, and I would like some backup, from other cfrs. If I could show her some info, she might reconsider. She doesn't come to the site, even though I have told her about it. She loves her child, so that is not in question. I just wish I could pursuade her that once the child gets sick its downhill from there. I need some help.

 

[kayleesgrandma]

I know someone I met here in town with a young child that has cf. It is "mild" at this time. The mother does the vest only once a day, and that is late at night when the child has a bath and is getting ready for bed. Sometimes she even misses a day. How bad is that for the child? I don't want to say anything without making sure it is really the wrong thing to be doing. The little boy is 4 and he now seems to have the chunky stuff in his throat, like he needs to cough. He never seemed to have that before. I have mentioned to the mother before that it is important to do preventative therapy so he doesn't get worse. Her answer is that "she must be doing something right, because he hasn't gotten sick yet!" I don't have the right to say much to the mother, but you know me, I am always opinionated, and I would like some backup, from other cfrs. If I could show her some info, she might reconsider. She doesn't come to the site, even though I have told her about it. She loves her child, so that is not in question. I just wish I could pursuade her that once the child gets sick its downhill from there. I need some help.

 

[kayleesgrandma]

I know someone I met here in town with a young child that has cf. It is "mild" at this time. The mother does the vest only once a day, and that is late at night when the child has a bath and is getting ready for bed. Sometimes she even misses a day. How bad is that for the child? I don't want to say anything without making sure it is really the wrong thing to be doing. The little boy is 4 and he now seems to have the chunky stuff in his throat, like he needs to cough. He never seemed to have that before. I have mentioned to the mother before that it is important to do preventative therapy so he doesn't get worse. Her answer is that "she must be doing something right, because he hasn't gotten sick yet!" I don't have the right to say much to the mother, but you know me, I am always opinionated, and I would like some backup, from other cfrs. If I could show her some info, she might reconsider. She doesn't come to the site, even though I have told her about it. She loves her child, so that is not in question. I just wish I could pursuade her that once the child gets sick its downhill from there. I need some help.

 

[NoExcuses]

CPT is essential. This disease is no longer about treating symptoms when they show up.... it's about prevention.

Especially at that age.

Many have the incorrect perception (especially at a young age) that if the kid is mild they will be for their whole life.

Prevention is everything. And doing the Vest starting at age 1 is a cornerstone of preventing CF progression.

 

[NoExcuses]

CPT is essential. This disease is no longer about treating symptoms when they show up.... it's about prevention.

Especially at that age.

Many have the incorrect perception (especially at a young age) that if the kid is mild they will be for their whole life.

Prevention is everything. And doing the Vest starting at age 1 is a cornerstone of preventing CF progression.

 

[NoExcuses]

CPT is essential. This disease is no longer about treating symptoms when they show up.... it's about prevention.

Especially at that age.

Many have the incorrect perception (especially at a young age) that if the kid is mild they will be for their whole life.

Prevention is everything. And doing the Vest starting at age 1 is a cornerstone of preventing CF progression.

 

[LouLou]

I had chest pt 3x a day to age 6, and 2x a day until age 12 when I rebelled and started replacing exercise (soccer) for therapy. I didn't have a productive cough - literally was unable to produce any mucus during cpt until age 12. If it weren't for this agressive care by my parents, my cf would have advanced much more quickly. I thank my my parents every year for caring for me so wonderfully and will forever feel indebted...especially to my mother who gave up her career to make my cf care a full time job. After diagnosis at age 2 I didn't get sick (beyond a normal cold once a year) until age 19. Hope this helps.

 

[LouLou]

I had chest pt 3x a day to age 6, and 2x a day until age 12 when I rebelled and started replacing exercise (soccer) for therapy. I didn't have a productive cough - literally was unable to produce any mucus during cpt until age 12. If it weren't for this agressive care by my parents, my cf would have advanced much more quickly. I thank my my parents every year for caring for me so wonderfully and will forever feel indebted...especially to my mother who gave up her career to make my cf care a full time job. After diagnosis at age 2 I didn't get sick (beyond a normal cold once a year) until age 19. Hope this helps.

 

[LouLou]

I had chest pt 3x a day to age 6, and 2x a day until age 12 when I rebelled and started replacing exercise (soccer) for therapy. I didn't have a productive cough - literally was unable to produce any mucus during cpt until age 12. If it weren't for this agressive care by my parents, my cf would have advanced much more quickly. I thank my my parents every year for caring for me so wonderfully and will forever feel indebted...especially to my mother who gave up her career to make my cf care a full time job. After diagnosis at age 2 I didn't get sick (beyond a normal cold once a year) until age 19. Hope this helps.

 

[Ratatosk]

Our doctor has stressed doing CPT/vest 3-4 times a day since DS was less than a week old. Bare minimum of twice a day, but we do 3 -- 4 or more if DS is sick and wheezy, congested... It's important to get in the habit, it's important to be proactive and practice good lung care. Once lung tissue is destroyed, you can't ever get it back.

I was horrified recently when attending a Great Strides Meeting and the mom (who is also an R.N.) of a 1 1/2 year old said that the local accreditted CF clinic doesn't recommend doing CPT until there area lung issues. They'd just started doing CPT once a day because her kid ended up in the hospital with pneumonia. And they were only to do it while he was sick.

Another parent, also of a newly diagnosed infant was quoted in a newspaper article as saying that the clinc told her "if the lungs become affected, then there are ways they can take care of those problems"

 

[Ratatosk]

Our doctor has stressed doing CPT/vest 3-4 times a day since DS was less than a week old. Bare minimum of twice a day, but we do 3 -- 4 or more if DS is sick and wheezy, congested... It's important to get in the habit, it's important to be proactive and practice good lung care. Once lung tissue is destroyed, you can't ever get it back.

I was horrified recently when attending a Great Strides Meeting and the mom (who is also an R.N.) of a 1 1/2 year old said that the local accreditted CF clinic doesn't recommend doing CPT until there area lung issues. They'd just started doing CPT once a day because her kid ended up in the hospital with pneumonia. And they were only to do it while he was sick.

Another parent, also of a newly diagnosed infant was quoted in a newspaper article as saying that the clinc told her "if the lungs become affected, then there are ways they can take care of those problems"

 

[Ratatosk]

Our doctor has stressed doing CPT/vest 3-4 times a day since DS was less than a week old. Bare minimum of twice a day, but we do 3 -- 4 or more if DS is sick and wheezy, congested... It's important to get in the habit, it's important to be proactive and practice good lung care. Once lung tissue is destroyed, you can't ever get it back.

I was horrified recently when attending a Great Strides Meeting and the mom (who is also an R.N.) of a 1 1/2 year old said that the local accreditted CF clinic doesn't recommend doing CPT until there area lung issues. They'd just started doing CPT once a day because her kid ended up in the hospital with pneumonia. And they were only to do it while he was sick.

Another parent, also of a newly diagnosed infant was quoted in a newspaper article as saying that the clinc told her "if the lungs become affected, then there are ways they can take care of those problems"

 

[JazzysMom]

It is so hard to realize what the impact of NOT doing CPT can be long term, but I am a perfect example of it. Preventative maintenance is so much easier in the long run then allowing a CFer to get sick and try to get them well while hoping, but having NO guarantee that damage hasnt been done. Its hard not to say something, but you have seen & heard on here time & time again how CPT can make or break you. I will say tho that sometimes you just cant get it thru peoples heads. IF the worst is not right in their face the true & harsh reality of CF fades into a distance. Good Luck!

 

[JazzysMom]

It is so hard to realize what the impact of NOT doing CPT can be long term, but I am a perfect example of it. Preventative maintenance is so much easier in the long run then allowing a CFer to get sick and try to get them well while hoping, but having NO guarantee that damage hasnt been done. Its hard not to say something, but you have seen & heard on here time & time again how CPT can make or break you. I will say tho that sometimes you just cant get it thru peoples heads. IF the worst is not right in their face the true & harsh reality of CF fades into a distance. Good Luck!

 

[JazzysMom]

It is so hard to realize what the impact of NOT doing CPT can be long term, but I am a perfect example of it. Preventative maintenance is so much easier in the long run then allowing a CFer to get sick and try to get them well while hoping, but having NO guarantee that damage hasnt been done. Its hard not to say something, but you have seen & heard on here time & time again how CPT can make or break you. I will say tho that sometimes you just cant get it thru peoples heads. IF the worst is not right in their face the true & harsh reality of CF fades into a distance. Good Luck!

 

[Ratatosk]

On a side note, I can't tell you how many times I've taken DS in to the local CF peds doctor or urgent care for an upper respiratory infection -- cough, fever only to be told that his lungs are clear or "besides, he has cf. Cfers cough, that's what they do".

Only to find that he has bronchitis or some other bug. It's to the point that I just call our CF doctor in the City and deal with him rather than spend $150+ for an office call to get told I'm overreacting.

 

[Ratatosk]

On a side note, I can't tell you how many times I've taken DS in to the local CF peds doctor or urgent care for an upper respiratory infection -- cough, fever only to be told that his lungs are clear or "besides, he has cf. Cfers cough, that's what they do".

Only to find that he has bronchitis or some other bug. It's to the point that I just call our CF doctor in the City and deal with him rather than spend $150+ for an office call to get told I'm overreacting.

 

[Ratatosk]

On a side note, I can't tell you how many times I've taken DS in to the local CF peds doctor or urgent care for an upper respiratory infection -- cough, fever only to be told that his lungs are clear or "besides, he has cf. Cfers cough, that's what they do".

Only to find that he has bronchitis or some other bug. It's to the point that I just call our CF doctor in the City and deal with him rather than spend $150+ for an office call to get told I'm overreacting.

 

[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!!!

 

[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!!!