x

[Ender]

not doing CPTs

Hey you,

I don't really do any physio....and I am 23 years old. I always hated it. I started doing nebulizers about a year ago as well. Right now my pft's hover at 81%.

In my experience, excercise has always been more beneficial to me...and i think this should be stressed more then pft's sometimes. Albeit if someone is sick and can't excercise, sure do what needs to be done. However, you can't tell me that doing a vest or acapella for 20 mins a day is better then running for 20 minutes. I just don't see the comparison.

The only thing i would be concerned about is his routine. Since i didn't do much therapy or nebs when i was younger, i had a hard time gettng used to it. It might be difficult for him later on to get used to it if he has never had to do it before. It doesn't have to be much, but starting now with something small might make it easier later on...

Do you use a nebulizer? If so, there is the pari pep that you fit on top...and basically he can do something like pulmozyme or HS and get the benefits of some sort of drainage...without a big vest or a different device. Good luck..

Kiel

 

[welshgirl]

not doing CPTs

i also believe that excercise plays a huge part in keeping joe healthy. he certainly has ants in his pants!!!!!!!!!! he is never still<img src="i/expressions/face-icon-small-happy.gif" border="0"> we do cpt in the morning (it's easier and takes no effort from joe). in the evening we do breathing excercises with his mask. we trampoline sometimes tooand a huge amount of footy!!!. you definitely should be doing some therapy or other though, even if it seem pointless, it's really not!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[welshgirl]

not doing CPTs

i also believe that excercise plays a huge part in keeping joe healthy. he certainly has ants in his pants!!!!!!!!!! he is never still<img src="i/expressions/face-icon-small-happy.gif" border="0"> we do cpt in the morning (it's easier and takes no effort from joe). in the evening we do breathing excercises with his mask. we trampoline sometimes tooand a huge amount of footy!!!. you definitely should be doing some therapy or other though, even if it seem pointless, it's really not!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[welshgirl]

not doing CPTs

i also believe that excercise plays a huge part in keeping joe healthy. he certainly has ants in his pants!!!!!!!!!! he is never still<img src="i/expressions/face-icon-small-happy.gif" border="0"> we do cpt in the morning (it's easier and takes no effort from joe). in the evening we do breathing excercises with his mask. we trampoline sometimes tooand a huge amount of footy!!!. you definitely should be doing some therapy or other though, even if it seem pointless, it's really not!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

not doing CPTs

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

Thanks Emily for the reply, that's just it, there are a lot of
people doing the vest and CPT and still getting sick and sicker,
there is also data out there in the Cochran Report that looks at
research that has been conducted that says the vest does not make a
difference in lung function...I don't know, if he had mucous, i
would not hesitate, but he had a bronch this summer and his lungs
looked great

thanks again</end quote></div>

I would love to see this Cochran Report. Do you have a copy?

 

[NoExcuses]

not doing CPTs

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

Thanks Emily for the reply, that's just it, there are a lot of
people doing the vest and CPT and still getting sick and sicker,
there is also data out there in the Cochran Report that looks at
research that has been conducted that says the vest does not make a
difference in lung function...I don't know, if he had mucous, i
would not hesitate, but he had a bronch this summer and his lungs
looked great

thanks again</end quote></div>

I would love to see this Cochran Report. Do you have a copy?

 

[NoExcuses]

not doing CPTs

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

Thanks Emily for the reply, that's just it, there are a lot of
people doing the vest and CPT and still getting sick and sicker,
there is also data out there in the Cochran Report that looks at
research that has been conducted that says the vest does not make a
difference in lung function...I don't know, if he had mucous, i
would not hesitate, but he had a bronch this summer and his lungs
looked great

thanks again</end quote></div>

I would love to see this Cochran Report. Do you have a copy?

 

[Marjolein]

not doing CPTs

Overhere in the Netherlands we don't have the VEST. And.. physio's are taught in school that CPT doesn't work.. That study's have shown that it can even contribute to more mucous in the lungs. That it's best to exercise and do breathing exercises.

Now with me, my old lungs, the breathing exercises didn't do much. Mucous wouldn't come up and i had to have CPT. My own physio at home did them on me, and when i was younger my mom and dad would do them every day too. I had my iv's at home most of the time but in the last year i was in the hospital a few times. And every time i had to 'argue' with the physio, because i wanted CPT and they said no...
I talked to a doctor about that and he said, they just had to do if it worked best for me, or otherwise i should ask my mom to do it, which i did. He said i know my body best and know what's best for me, from experience.

I can't really help you, but if he is staying this healthy all these years on the routine you have. I'd think it's a good routine..

 

[Marjolein]

not doing CPTs

Overhere in the Netherlands we don't have the VEST. And.. physio's are taught in school that CPT doesn't work.. That study's have shown that it can even contribute to more mucous in the lungs. That it's best to exercise and do breathing exercises.

Now with me, my old lungs, the breathing exercises didn't do much. Mucous wouldn't come up and i had to have CPT. My own physio at home did them on me, and when i was younger my mom and dad would do them every day too. I had my iv's at home most of the time but in the last year i was in the hospital a few times. And every time i had to 'argue' with the physio, because i wanted CPT and they said no...
I talked to a doctor about that and he said, they just had to do if it worked best for me, or otherwise i should ask my mom to do it, which i did. He said i know my body best and know what's best for me, from experience.

I can't really help you, but if he is staying this healthy all these years on the routine you have. I'd think it's a good routine..

 

[Marjolein]

not doing CPTs

Overhere in the Netherlands we don't have the VEST. And.. physio's are taught in school that CPT doesn't work.. That study's have shown that it can even contribute to more mucous in the lungs. That it's best to exercise and do breathing exercises.

Now with me, my old lungs, the breathing exercises didn't do much. Mucous wouldn't come up and i had to have CPT. My own physio at home did them on me, and when i was younger my mom and dad would do them every day too. I had my iv's at home most of the time but in the last year i was in the hospital a few times. And every time i had to 'argue' with the physio, because i wanted CPT and they said no...
I talked to a doctor about that and he said, they just had to do if it worked best for me, or otherwise i should ask my mom to do it, which i did. He said i know my body best and know what's best for me, from experience.

I can't really help you, but if he is staying this healthy all these years on the routine you have. I'd think it's a good routine..

 

[NoExcuses]

not doing CPTs

There are definitely CFers who are extremely mild in their younger years.... even while not doing many of the typical CF treatments.

But the way that CF is treated now is prevention. YOu mention that your son hasn't had infections, has been hospitalized, etc. Which is great. But treatment is meant to keep him that way.

The harsh reality of CF is that it is progressive. Your kid won't always be the way that he is right now. Melissa is a great example of being extremely healthy when she was younger but now in her 30s, she must care for her self actively.

I have found that those who had extremely mild CF as children and who didn't do regularly prescribed CF meds have a very difficult time complying with it at an older age. Not because there's anyting wrong with them - but simply because forming habbits as a young child will most likely lead to compliance later in life. Kind of like getting in the habbit of wearing a seat belt.

Ultimately, when your kid get sick his illness will progress more rapidly if he's not always using some form of mucus clearance.

Best of luck!

I want to add my own experience. I didn't have my 1st hospitalization until I was 9. And even that was due to developing severe, severe allergies. I didn't get PA until I was much older either. My PFT's havel always been above 100 until a few years ago (I'm 25).

I know I'm as rediculously healthy as I am today because I've practice preventative medicine. I did meds even when I felt good and when there were no signs of infection. And I know this has prevented many infections and lung damage.

 

[NoExcuses]

not doing CPTs

There are definitely CFers who are extremely mild in their younger years.... even while not doing many of the typical CF treatments.

But the way that CF is treated now is prevention. YOu mention that your son hasn't had infections, has been hospitalized, etc. Which is great. But treatment is meant to keep him that way.

The harsh reality of CF is that it is progressive. Your kid won't always be the way that he is right now. Melissa is a great example of being extremely healthy when she was younger but now in her 30s, she must care for her self actively.

I have found that those who had extremely mild CF as children and who didn't do regularly prescribed CF meds have a very difficult time complying with it at an older age. Not because there's anyting wrong with them - but simply because forming habbits as a young child will most likely lead to compliance later in life. Kind of like getting in the habbit of wearing a seat belt.

Ultimately, when your kid get sick his illness will progress more rapidly if he's not always using some form of mucus clearance.

Best of luck!

I want to add my own experience. I didn't have my 1st hospitalization until I was 9. And even that was due to developing severe, severe allergies. I didn't get PA until I was much older either. My PFT's havel always been above 100 until a few years ago (I'm 25).

I know I'm as rediculously healthy as I am today because I've practice preventative medicine. I did meds even when I felt good and when there were no signs of infection. And I know this has prevented many infections and lung damage.

 

[NoExcuses]

not doing CPTs

There are definitely CFers who are extremely mild in their younger years.... even while not doing many of the typical CF treatments.

But the way that CF is treated now is prevention. YOu mention that your son hasn't had infections, has been hospitalized, etc. Which is great. But treatment is meant to keep him that way.

The harsh reality of CF is that it is progressive. Your kid won't always be the way that he is right now. Melissa is a great example of being extremely healthy when she was younger but now in her 30s, she must care for her self actively.

I have found that those who had extremely mild CF as children and who didn't do regularly prescribed CF meds have a very difficult time complying with it at an older age. Not because there's anyting wrong with them - but simply because forming habbits as a young child will most likely lead to compliance later in life. Kind of like getting in the habbit of wearing a seat belt.

Ultimately, when your kid get sick his illness will progress more rapidly if he's not always using some form of mucus clearance.

Best of luck!

I want to add my own experience. I didn't have my 1st hospitalization until I was 9. And even that was due to developing severe, severe allergies. I didn't get PA until I was much older either. My PFT's havel always been above 100 until a few years ago (I'm 25).

I know I'm as rediculously healthy as I am today because I've practice preventative medicine. I did meds even when I felt good and when there were no signs of infection. And I know this has prevented many infections and lung damage.

 

[Ratatosk]

not doing CPTs

Our CF doctor is more of a proponent of CPT. Feels it's better than the vest in some aspects -- plus, you'll always have your hands; however, he does prescribe the vest. Convenience... From day one he insists on CPT 3-4 times a day, bare minimum of twice. We usually do it 3 times a day, 4 is DS isn't feeling well. Last appointment he indicated that his healthier patients have parents who do CPT 4 times a day -- some in conjunction with the vest.

For us, it's been habit since he was a few days old. It actually calms him and he usually falls asleep. There are times when he doesn't want to sit still, but we pretty much have a routine, a schedule and don't let him get out of treatments, would just make things harder if he knows he could get out of it.

A friend of mine's granddaughter wasn't diagnosed until she was a year and a half old and until they got the vest cpt was horrible -- she cried, screamed and CPT took close to an hour each time, didn't understand why her parents were hitting her.

IMO, I feel -- CPT is oh so important. Get things up and out of there. Keep those lungs happy and healthy. It's not always convenient, sometimes we feel rushed. But proper lung care for us is our top priority.

 

[Ratatosk]

not doing CPTs

Our CF doctor is more of a proponent of CPT. Feels it's better than the vest in some aspects -- plus, you'll always have your hands; however, he does prescribe the vest. Convenience... From day one he insists on CPT 3-4 times a day, bare minimum of twice. We usually do it 3 times a day, 4 is DS isn't feeling well. Last appointment he indicated that his healthier patients have parents who do CPT 4 times a day -- some in conjunction with the vest.

For us, it's been habit since he was a few days old. It actually calms him and he usually falls asleep. There are times when he doesn't want to sit still, but we pretty much have a routine, a schedule and don't let him get out of treatments, would just make things harder if he knows he could get out of it.

A friend of mine's granddaughter wasn't diagnosed until she was a year and a half old and until they got the vest cpt was horrible -- she cried, screamed and CPT took close to an hour each time, didn't understand why her parents were hitting her.

IMO, I feel -- CPT is oh so important. Get things up and out of there. Keep those lungs happy and healthy. It's not always convenient, sometimes we feel rushed. But proper lung care for us is our top priority.

 

[Ratatosk]

not doing CPTs

Our CF doctor is more of a proponent of CPT. Feels it's better than the vest in some aspects -- plus, you'll always have your hands; however, he does prescribe the vest. Convenience... From day one he insists on CPT 3-4 times a day, bare minimum of twice. We usually do it 3 times a day, 4 is DS isn't feeling well. Last appointment he indicated that his healthier patients have parents who do CPT 4 times a day -- some in conjunction with the vest.

For us, it's been habit since he was a few days old. It actually calms him and he usually falls asleep. There are times when he doesn't want to sit still, but we pretty much have a routine, a schedule and don't let him get out of treatments, would just make things harder if he knows he could get out of it.

A friend of mine's granddaughter wasn't diagnosed until she was a year and a half old and until they got the vest cpt was horrible -- she cried, screamed and CPT took close to an hour each time, didn't understand why her parents were hitting her.

IMO, I feel -- CPT is oh so important. Get things up and out of there. Keep those lungs happy and healthy. It's not always convenient, sometimes we feel rushed. But proper lung care for us is our top priority.

 

[point]

not doing CPTs

SORRY LONG POST!
I can relate to this, but from a different perspective. I grew up with daily CPT - except on weekends. That was our "vacation" from it. My parents completed CPT manually on all three of us (both my brothers have CF as well). We were all dx young so CPT was basically from dx until about age 13 for me. I am the youngest, so as my brothers grew older it was just easier for our parents to stop doing the CPT - plus my development made chest CPT uncomfortable.

My PFT's have always been great. Same with my oldest brother therefore, we stopped CPT altogether, but we were both very active - sports, singing, orchestra, etc - all activites that utilize our lungs and pushed our capacities. My middle brother had struggling PFT's and continued CPT through a percussor, but not super religiously. As a kid - up through high school - I never coughed. I was never ill. I never cultured anything. I did take enzymes with meals be/c I need them. I basically lived my life as if I didn't have CF - be/c I was asymptomatic at the time.

Now, I am 29 and started culturing Pseudomonas at age 20. My PFT's are still through the roof, FEV 116% FVC 140%, but my brothers are starting to decline a small amount. They are both in their 30's, but their PFT's have declined over the years to be around the 80's percentile. I have to finally start accepting that I have CF and I will get worse. I have to try to be self-disciplined and complete my CPT daily while balancing my full time job, maintaining my house, and being married. I started saline neb's just as a preventive last week and I need to get on that bandwagon as well.

Okay, I swear I am getting to a point. A few thoughts based on my experience and my steps toward dealing with my disease......
1) It is best to try to fit CPT into his schedule NOW so that it isn't devastating when he does NEED it in the future. Fit it in a few times a week while he is watching tv, and be upfront with your practioner about it. Definitely use it while he is sick. KEEP HIM EXERCISING THOUGH! This is great for him, and great of you to support and teach a healthy lifestyle.
*** Teach him that he isn't doing CPT be/c he is sick. He is doing it be/c he wants to remain fantastic.
2) Skipping his CPT's is easier for all of you emotionally be/c CPT is an outward sign to all of you within your family that he has CF and it is a horrible disease. Please don't be offended by this. I grew up "knowing" I had CF. It was kind of hard to deny when I had myself and two older brothers and no other siblings. CF was our way of life, but I could always pass it off as being mild and that I wasn't part of that "sick CF" group. He may be learning this as well.

Now, positive thinking is great to have, but it is better to have him participating in all aspects of his healthcare now, in a preventive manor. Lord willing, he will be able to thank you for it when you are all older and grayer which is what the CFF and its recommendations have given patients and families who are dealt the hand of CF.

High Regards,

 

[point]

not doing CPTs

SORRY LONG POST!
I can relate to this, but from a different perspective. I grew up with daily CPT - except on weekends. That was our "vacation" from it. My parents completed CPT manually on all three of us (both my brothers have CF as well). We were all dx young so CPT was basically from dx until about age 13 for me. I am the youngest, so as my brothers grew older it was just easier for our parents to stop doing the CPT - plus my development made chest CPT uncomfortable.

My PFT's have always been great. Same with my oldest brother therefore, we stopped CPT altogether, but we were both very active - sports, singing, orchestra, etc - all activites that utilize our lungs and pushed our capacities. My middle brother had struggling PFT's and continued CPT through a percussor, but not super religiously. As a kid - up through high school - I never coughed. I was never ill. I never cultured anything. I did take enzymes with meals be/c I need them. I basically lived my life as if I didn't have CF - be/c I was asymptomatic at the time.

Now, I am 29 and started culturing Pseudomonas at age 20. My PFT's are still through the roof, FEV 116% FVC 140%, but my brothers are starting to decline a small amount. They are both in their 30's, but their PFT's have declined over the years to be around the 80's percentile. I have to finally start accepting that I have CF and I will get worse. I have to try to be self-disciplined and complete my CPT daily while balancing my full time job, maintaining my house, and being married. I started saline neb's just as a preventive last week and I need to get on that bandwagon as well.

Okay, I swear I am getting to a point. A few thoughts based on my experience and my steps toward dealing with my disease......
1) It is best to try to fit CPT into his schedule NOW so that it isn't devastating when he does NEED it in the future. Fit it in a few times a week while he is watching tv, and be upfront with your practioner about it. Definitely use it while he is sick. KEEP HIM EXERCISING THOUGH! This is great for him, and great of you to support and teach a healthy lifestyle.
*** Teach him that he isn't doing CPT be/c he is sick. He is doing it be/c he wants to remain fantastic.
2) Skipping his CPT's is easier for all of you emotionally be/c CPT is an outward sign to all of you within your family that he has CF and it is a horrible disease. Please don't be offended by this. I grew up "knowing" I had CF. It was kind of hard to deny when I had myself and two older brothers and no other siblings. CF was our way of life, but I could always pass it off as being mild and that I wasn't part of that "sick CF" group. He may be learning this as well.

Now, positive thinking is great to have, but it is better to have him participating in all aspects of his healthcare now, in a preventive manor. Lord willing, he will be able to thank you for it when you are all older and grayer which is what the CFF and its recommendations have given patients and families who are dealt the hand of CF.

High Regards,

 

[point]

not doing CPTs

SORRY LONG POST!
I can relate to this, but from a different perspective. I grew up with daily CPT - except on weekends. That was our "vacation" from it. My parents completed CPT manually on all three of us (both my brothers have CF as well). We were all dx young so CPT was basically from dx until about age 13 for me. I am the youngest, so as my brothers grew older it was just easier for our parents to stop doing the CPT - plus my development made chest CPT uncomfortable.

My PFT's have always been great. Same with my oldest brother therefore, we stopped CPT altogether, but we were both very active - sports, singing, orchestra, etc - all activites that utilize our lungs and pushed our capacities. My middle brother had struggling PFT's and continued CPT through a percussor, but not super religiously. As a kid - up through high school - I never coughed. I was never ill. I never cultured anything. I did take enzymes with meals be/c I need them. I basically lived my life as if I didn't have CF - be/c I was asymptomatic at the time.

Now, I am 29 and started culturing Pseudomonas at age 20. My PFT's are still through the roof, FEV 116% FVC 140%, but my brothers are starting to decline a small amount. They are both in their 30's, but their PFT's have declined over the years to be around the 80's percentile. I have to finally start accepting that I have CF and I will get worse. I have to try to be self-disciplined and complete my CPT daily while balancing my full time job, maintaining my house, and being married. I started saline neb's just as a preventive last week and I need to get on that bandwagon as well.

Okay, I swear I am getting to a point. A few thoughts based on my experience and my steps toward dealing with my disease......
1) It is best to try to fit CPT into his schedule NOW so that it isn't devastating when he does NEED it in the future. Fit it in a few times a week while he is watching tv, and be upfront with your practioner about it. Definitely use it while he is sick. KEEP HIM EXERCISING THOUGH! This is great for him, and great of you to support and teach a healthy lifestyle.
*** Teach him that he isn't doing CPT be/c he is sick. He is doing it be/c he wants to remain fantastic.
2) Skipping his CPT's is easier for all of you emotionally be/c CPT is an outward sign to all of you within your family that he has CF and it is a horrible disease. Please don't be offended by this. I grew up "knowing" I had CF. It was kind of hard to deny when I had myself and two older brothers and no other siblings. CF was our way of life, but I could always pass it off as being mild and that I wasn't part of that "sick CF" group. He may be learning this as well.

Now, positive thinking is great to have, but it is better to have him participating in all aspects of his healthcare now, in a preventive manor. Lord willing, he will be able to thank you for it when you are all older and grayer which is what the CFF and its recommendations have given patients and families who are dealt the hand of CF.

High Regards,

 

[point]

not doing CPTs

Ratatosk - -
Just wanted to add that it is SO GREAT that you make the CPT part of your routine. My parents did it for us every morning while we were kids and it became a bonding time for all of us. We would fight about who got to go "first" in the morning with our parents be/c we would have more time to hang out and watch cartoons. I also would fall asleep while my parents were doing manual CPT. It means sooo much to me now when I realize how much dedication and time it took my parents to make this part of their schedules. Your son will be thankful to you -