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- Thread starter Anns
- Start date
not doing CPTs
The anonymous post at 7:25pm yesterday was me! I thought thea anon was also turned off and I beleived I was signed in! Sorry, I do not post anonymously and sorry if there was any confusion, but that was me and I signed off right after I posted and only just now saw that it was posted anonymously, I have my sig set, so I just assumed I was logged in and it would put my name at the bottom!
The anonymous post at 7:25pm yesterday was me! I thought thea anon was also turned off and I beleived I was signed in! Sorry, I do not post anonymously and sorry if there was any confusion, but that was me and I signed off right after I posted and only just now saw that it was posted anonymously, I have my sig set, so I just assumed I was logged in and it would put my name at the bottom!
not doing CPTs
The anonymous post at 7:25pm yesterday was me! I thought thea anon was also turned off and I beleived I was signed in! Sorry, I do not post anonymously and sorry if there was any confusion, but that was me and I signed off right after I posted and only just now saw that it was posted anonymously, I have my sig set, so I just assumed I was logged in and it would put my name at the bottom!
The anonymous post at 7:25pm yesterday was me! I thought thea anon was also turned off and I beleived I was signed in! Sorry, I do not post anonymously and sorry if there was any confusion, but that was me and I signed off right after I posted and only just now saw that it was posted anonymously, I have my sig set, so I just assumed I was logged in and it would put my name at the bottom!
not doing CPTs
The anonymous post at 7:25pm yesterday was me! I thought thea anon was also turned off and I beleived I was signed in! Sorry, I do not post anonymously and sorry if there was any confusion, but that was me and I signed off right after I posted and only just now saw that it was posted anonymously, I have my sig set, so I just assumed I was logged in and it would put my name at the bottom!
The anonymous post at 7:25pm yesterday was me! I thought thea anon was also turned off and I beleived I was signed in! Sorry, I do not post anonymously and sorry if there was any confusion, but that was me and I signed off right after I posted and only just now saw that it was posted anonymously, I have my sig set, so I just assumed I was logged in and it would put my name at the bottom!
not doing CPTs
I don't know, I think that it is a bad idea not to do CPT. If they get into a routine now, then it makes it so much easier when they get sick. The thing I don't get is that it doesn HURT them in anyway so why not. The acappella takes 10 minutes and it is a little hand held device that you breathe into. It can't hurt to try it. If it doesn't do anything then it doesn't. At least when he needs it it will help.
Also, with something like the acappella he is learning HOW to do it. If he does it only when he needs it then he won't know the correct way because he wasn't practicing.
i was diagnosed at 5 and always heard up until i was a teenager that no one would know by looking at my lungs that I had CF. My mom did CPT religiously until I was about 10 and then stopped. When I got worse and had to start the Flutter I had a horrible time starting it because I was a teenager and didn't want more medicine. I wish more than anything I had this routine when I was younger so that I didn't even have to think about it.
I just feel that if it can't hurt, and it might help why not spend that short time doing it?
I don't know, I think that it is a bad idea not to do CPT. If they get into a routine now, then it makes it so much easier when they get sick. The thing I don't get is that it doesn HURT them in anyway so why not. The acappella takes 10 minutes and it is a little hand held device that you breathe into. It can't hurt to try it. If it doesn't do anything then it doesn't. At least when he needs it it will help.
Also, with something like the acappella he is learning HOW to do it. If he does it only when he needs it then he won't know the correct way because he wasn't practicing.
i was diagnosed at 5 and always heard up until i was a teenager that no one would know by looking at my lungs that I had CF. My mom did CPT religiously until I was about 10 and then stopped. When I got worse and had to start the Flutter I had a horrible time starting it because I was a teenager and didn't want more medicine. I wish more than anything I had this routine when I was younger so that I didn't even have to think about it.
I just feel that if it can't hurt, and it might help why not spend that short time doing it?
not doing CPTs
I don't know, I think that it is a bad idea not to do CPT. If they get into a routine now, then it makes it so much easier when they get sick. The thing I don't get is that it doesn HURT them in anyway so why not. The acappella takes 10 minutes and it is a little hand held device that you breathe into. It can't hurt to try it. If it doesn't do anything then it doesn't. At least when he needs it it will help.
Also, with something like the acappella he is learning HOW to do it. If he does it only when he needs it then he won't know the correct way because he wasn't practicing.
i was diagnosed at 5 and always heard up until i was a teenager that no one would know by looking at my lungs that I had CF. My mom did CPT religiously until I was about 10 and then stopped. When I got worse and had to start the Flutter I had a horrible time starting it because I was a teenager and didn't want more medicine. I wish more than anything I had this routine when I was younger so that I didn't even have to think about it.
I just feel that if it can't hurt, and it might help why not spend that short time doing it?
I don't know, I think that it is a bad idea not to do CPT. If they get into a routine now, then it makes it so much easier when they get sick. The thing I don't get is that it doesn HURT them in anyway so why not. The acappella takes 10 minutes and it is a little hand held device that you breathe into. It can't hurt to try it. If it doesn't do anything then it doesn't. At least when he needs it it will help.
Also, with something like the acappella he is learning HOW to do it. If he does it only when he needs it then he won't know the correct way because he wasn't practicing.
i was diagnosed at 5 and always heard up until i was a teenager that no one would know by looking at my lungs that I had CF. My mom did CPT religiously until I was about 10 and then stopped. When I got worse and had to start the Flutter I had a horrible time starting it because I was a teenager and didn't want more medicine. I wish more than anything I had this routine when I was younger so that I didn't even have to think about it.
I just feel that if it can't hurt, and it might help why not spend that short time doing it?
not doing CPTs
I don't know, I think that it is a bad idea not to do CPT. If they get into a routine now, then it makes it so much easier when they get sick. The thing I don't get is that it doesn HURT them in anyway so why not. The acappella takes 10 minutes and it is a little hand held device that you breathe into. It can't hurt to try it. If it doesn't do anything then it doesn't. At least when he needs it it will help.
Also, with something like the acappella he is learning HOW to do it. If he does it only when he needs it then he won't know the correct way because he wasn't practicing.
i was diagnosed at 5 and always heard up until i was a teenager that no one would know by looking at my lungs that I had CF. My mom did CPT religiously until I was about 10 and then stopped. When I got worse and had to start the Flutter I had a horrible time starting it because I was a teenager and didn't want more medicine. I wish more than anything I had this routine when I was younger so that I didn't even have to think about it.
I just feel that if it can't hurt, and it might help why not spend that short time doing it?
I don't know, I think that it is a bad idea not to do CPT. If they get into a routine now, then it makes it so much easier when they get sick. The thing I don't get is that it doesn HURT them in anyway so why not. The acappella takes 10 minutes and it is a little hand held device that you breathe into. It can't hurt to try it. If it doesn't do anything then it doesn't. At least when he needs it it will help.
Also, with something like the acappella he is learning HOW to do it. If he does it only when he needs it then he won't know the correct way because he wasn't practicing.
i was diagnosed at 5 and always heard up until i was a teenager that no one would know by looking at my lungs that I had CF. My mom did CPT religiously until I was about 10 and then stopped. When I got worse and had to start the Flutter I had a horrible time starting it because I was a teenager and didn't want more medicine. I wish more than anything I had this routine when I was younger so that I didn't even have to think about it.
I just feel that if it can't hurt, and it might help why not spend that short time doing it?
not doing CPTs
cf disease progression has <u>a lot </u>to do with genetics. genetics that dr./researchers/patients don't completely understand right now.
cf patients and caregivers have to be okay with their own decisions on their care and live with their decisions. nothing is predictable with cf. even pseudo infection/ flora. my oldest brother is 34 and pseudo free, and has never needed to do neb'ed meds - puffers, TOBI, collistin, etc. so these drugs aren't even keeping cf patients from becoming colonized (though at times, it can effectively <i>treat </i>a patient).
what treatment is enough? it depends on what you determine it to be and what you can live with.
cf disease progression has <u>a lot </u>to do with genetics. genetics that dr./researchers/patients don't completely understand right now.
cf patients and caregivers have to be okay with their own decisions on their care and live with their decisions. nothing is predictable with cf. even pseudo infection/ flora. my oldest brother is 34 and pseudo free, and has never needed to do neb'ed meds - puffers, TOBI, collistin, etc. so these drugs aren't even keeping cf patients from becoming colonized (though at times, it can effectively <i>treat </i>a patient).
what treatment is enough? it depends on what you determine it to be and what you can live with.
not doing CPTs
cf disease progression has <u>a lot </u>to do with genetics. genetics that dr./researchers/patients don't completely understand right now.
cf patients and caregivers have to be okay with their own decisions on their care and live with their decisions. nothing is predictable with cf. even pseudo infection/ flora. my oldest brother is 34 and pseudo free, and has never needed to do neb'ed meds - puffers, TOBI, collistin, etc. so these drugs aren't even keeping cf patients from becoming colonized (though at times, it can effectively <i>treat </i>a patient).
what treatment is enough? it depends on what you determine it to be and what you can live with.
cf disease progression has <u>a lot </u>to do with genetics. genetics that dr./researchers/patients don't completely understand right now.
cf patients and caregivers have to be okay with their own decisions on their care and live with their decisions. nothing is predictable with cf. even pseudo infection/ flora. my oldest brother is 34 and pseudo free, and has never needed to do neb'ed meds - puffers, TOBI, collistin, etc. so these drugs aren't even keeping cf patients from becoming colonized (though at times, it can effectively <i>treat </i>a patient).
what treatment is enough? it depends on what you determine it to be and what you can live with.
not doing CPTs
cf disease progression has <u>a lot </u>to do with genetics. genetics that dr./researchers/patients don't completely understand right now.
cf patients and caregivers have to be okay with their own decisions on their care and live with their decisions. nothing is predictable with cf. even pseudo infection/ flora. my oldest brother is 34 and pseudo free, and has never needed to do neb'ed meds - puffers, TOBI, collistin, etc. so these drugs aren't even keeping cf patients from becoming colonized (though at times, it can effectively <i>treat </i>a patient).
what treatment is enough? it depends on what you determine it to be and what you can live with.
cf disease progression has <u>a lot </u>to do with genetics. genetics that dr./researchers/patients don't completely understand right now.
cf patients and caregivers have to be okay with their own decisions on their care and live with their decisions. nothing is predictable with cf. even pseudo infection/ flora. my oldest brother is 34 and pseudo free, and has never needed to do neb'ed meds - puffers, TOBI, collistin, etc. so these drugs aren't even keeping cf patients from becoming colonized (though at times, it can effectively <i>treat </i>a patient).
what treatment is enough? it depends on what you determine it to be and what you can live with.
CFHockeyMom
New member
not doing CPTs
OP (Anns),
I'm confused about what you were hoping to gain from starting this thread.
<div class="FTQUOTE"><begin quote>I work really hard to keep my child healthy loading him w/ food, seeing that he gets physical activity almost daily, football, basketball, wrestling soccer, trampoline and even taking him to run at the track, I feel this is much better than any machine can do for him and I do not want him tied down to a machine he may not be needing and making him think he is sicker than he is. One day I am afraid I will regret not having him do CPTS, but not sure it's needed at this time, w/ FEV1 over 100% regularly Any thoughts from parents or adult CFers that have encountered this?</end quote></div>
You asked for input about doing CPT's. Now you're getting input and getting defensive.
<div class="FTQUOTE"><begin quote>since my son does not have the mucus in his lung I feel it is a waste of time, I could beat on his chest or he could use the vest for 3 hrs and he would not cough anything up.</end quote></div>
<div class="FTQUOTE"><begin quote>I am trying to do what is best for my son, I know my son better than any doctor that sees every 4 times a year. The reasoning that u should do it now do that it becomes a part of him, does not hold weight w/ me.</end quote></div>
<div class="FTQUOTE"><begin quote>I'm just not tying him down to a machine that is not dong anything for him</end quote></div>
If you only wanted opinions from people that agreed with you then you should have asked for just that.
OP (Anns),
I'm confused about what you were hoping to gain from starting this thread.
<div class="FTQUOTE"><begin quote>I work really hard to keep my child healthy loading him w/ food, seeing that he gets physical activity almost daily, football, basketball, wrestling soccer, trampoline and even taking him to run at the track, I feel this is much better than any machine can do for him and I do not want him tied down to a machine he may not be needing and making him think he is sicker than he is. One day I am afraid I will regret not having him do CPTS, but not sure it's needed at this time, w/ FEV1 over 100% regularly Any thoughts from parents or adult CFers that have encountered this?</end quote></div>
You asked for input about doing CPT's. Now you're getting input and getting defensive.
<div class="FTQUOTE"><begin quote>since my son does not have the mucus in his lung I feel it is a waste of time, I could beat on his chest or he could use the vest for 3 hrs and he would not cough anything up.</end quote></div>
<div class="FTQUOTE"><begin quote>I am trying to do what is best for my son, I know my son better than any doctor that sees every 4 times a year. The reasoning that u should do it now do that it becomes a part of him, does not hold weight w/ me.</end quote></div>
<div class="FTQUOTE"><begin quote>I'm just not tying him down to a machine that is not dong anything for him</end quote></div>
If you only wanted opinions from people that agreed with you then you should have asked for just that.
CFHockeyMom
New member
not doing CPTs
OP (Anns),
I'm confused about what you were hoping to gain from starting this thread.
<div class="FTQUOTE"><begin quote>I work really hard to keep my child healthy loading him w/ food, seeing that he gets physical activity almost daily, football, basketball, wrestling soccer, trampoline and even taking him to run at the track, I feel this is much better than any machine can do for him and I do not want him tied down to a machine he may not be needing and making him think he is sicker than he is. One day I am afraid I will regret not having him do CPTS, but not sure it's needed at this time, w/ FEV1 over 100% regularly Any thoughts from parents or adult CFers that have encountered this?</end quote></div>
You asked for input about doing CPT's. Now you're getting input and getting defensive.
<div class="FTQUOTE"><begin quote>since my son does not have the mucus in his lung I feel it is a waste of time, I could beat on his chest or he could use the vest for 3 hrs and he would not cough anything up.</end quote></div>
<div class="FTQUOTE"><begin quote>I am trying to do what is best for my son, I know my son better than any doctor that sees every 4 times a year. The reasoning that u should do it now do that it becomes a part of him, does not hold weight w/ me.</end quote></div>
<div class="FTQUOTE"><begin quote>I'm just not tying him down to a machine that is not dong anything for him</end quote></div>
If you only wanted opinions from people that agreed with you then you should have asked for just that.
OP (Anns),
I'm confused about what you were hoping to gain from starting this thread.
<div class="FTQUOTE"><begin quote>I work really hard to keep my child healthy loading him w/ food, seeing that he gets physical activity almost daily, football, basketball, wrestling soccer, trampoline and even taking him to run at the track, I feel this is much better than any machine can do for him and I do not want him tied down to a machine he may not be needing and making him think he is sicker than he is. One day I am afraid I will regret not having him do CPTS, but not sure it's needed at this time, w/ FEV1 over 100% regularly Any thoughts from parents or adult CFers that have encountered this?</end quote></div>
You asked for input about doing CPT's. Now you're getting input and getting defensive.
<div class="FTQUOTE"><begin quote>since my son does not have the mucus in his lung I feel it is a waste of time, I could beat on his chest or he could use the vest for 3 hrs and he would not cough anything up.</end quote></div>
<div class="FTQUOTE"><begin quote>I am trying to do what is best for my son, I know my son better than any doctor that sees every 4 times a year. The reasoning that u should do it now do that it becomes a part of him, does not hold weight w/ me.</end quote></div>
<div class="FTQUOTE"><begin quote>I'm just not tying him down to a machine that is not dong anything for him</end quote></div>
If you only wanted opinions from people that agreed with you then you should have asked for just that.
CFHockeyMom
New member
not doing CPTs
OP (Anns),
I'm confused about what you were hoping to gain from starting this thread.
<div class="FTQUOTE"><begin quote>I work really hard to keep my child healthy loading him w/ food, seeing that he gets physical activity almost daily, football, basketball, wrestling soccer, trampoline and even taking him to run at the track, I feel this is much better than any machine can do for him and I do not want him tied down to a machine he may not be needing and making him think he is sicker than he is. One day I am afraid I will regret not having him do CPTS, but not sure it's needed at this time, w/ FEV1 over 100% regularly Any thoughts from parents or adult CFers that have encountered this?</end quote></div>
You asked for input about doing CPT's. Now you're getting input and getting defensive.
<div class="FTQUOTE"><begin quote>since my son does not have the mucus in his lung I feel it is a waste of time, I could beat on his chest or he could use the vest for 3 hrs and he would not cough anything up.</end quote></div>
<div class="FTQUOTE"><begin quote>I am trying to do what is best for my son, I know my son better than any doctor that sees every 4 times a year. The reasoning that u should do it now do that it becomes a part of him, does not hold weight w/ me.</end quote></div>
<div class="FTQUOTE"><begin quote>I'm just not tying him down to a machine that is not dong anything for him</end quote></div>
If you only wanted opinions from people that agreed with you then you should have asked for just that.
OP (Anns),
I'm confused about what you were hoping to gain from starting this thread.
<div class="FTQUOTE"><begin quote>I work really hard to keep my child healthy loading him w/ food, seeing that he gets physical activity almost daily, football, basketball, wrestling soccer, trampoline and even taking him to run at the track, I feel this is much better than any machine can do for him and I do not want him tied down to a machine he may not be needing and making him think he is sicker than he is. One day I am afraid I will regret not having him do CPTS, but not sure it's needed at this time, w/ FEV1 over 100% regularly Any thoughts from parents or adult CFers that have encountered this?</end quote></div>
You asked for input about doing CPT's. Now you're getting input and getting defensive.
<div class="FTQUOTE"><begin quote>since my son does not have the mucus in his lung I feel it is a waste of time, I could beat on his chest or he could use the vest for 3 hrs and he would not cough anything up.</end quote></div>
<div class="FTQUOTE"><begin quote>I am trying to do what is best for my son, I know my son better than any doctor that sees every 4 times a year. The reasoning that u should do it now do that it becomes a part of him, does not hold weight w/ me.</end quote></div>
<div class="FTQUOTE"><begin quote>I'm just not tying him down to a machine that is not dong anything for him</end quote></div>
If you only wanted opinions from people that agreed with you then you should have asked for just that.