x

[Allie]

not doing CPTs

Amy, I subscribe to the Cochrane report, but I couldn't find the one that said CPT was useless. I did find one saying that it appears most forms of physio, if complied with, have similar results. Chest physiotheraphy is just as good. Maybe she mistook that for saying that the vest didn't help

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cochrane.org/reviews/en/ab002011.html
">http://www.cochrane.org/reviews/en/ab002011.html
</a>

 

[Allie]

not doing CPTs

Amy, I subscribe to the Cochrane report, but I couldn't find the one that said CPT was useless. I did find one saying that it appears most forms of physio, if complied with, have similar results. Chest physiotheraphy is just as good. Maybe she mistook that for saying that the vest didn't help

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cochrane.org/reviews/en/ab002011.html
">http://www.cochrane.org/reviews/en/ab002011.html
</a>

 

[Allie]

not doing CPTs

Amy, I subscribe to the Cochrane report, but I couldn't find the one that said CPT was useless. I did find one saying that it appears most forms of physio, if complied with, have similar results. Chest physiotheraphy is just as good. Maybe she mistook that for saying that the vest didn't help

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cochrane.org/reviews/en/ab002011.html
">http://www.cochrane.org/reviews/en/ab002011.html
</a>

 

[Anns]

o

 

[Anns]

o

 

[Anns]

o

 

[ReneeP]

not doing CPTs

I find your question interesting because I have often asked myself the same thing. I have 2 daugters with CF (both Double Delta F508). I really can't say if the vest or acapella do them any good at all. I can't tell a difference whether they do it or not. The same for all the other meds (minus the nasal sprays for my younger one...she does need those because she has horrible sinus problems...and enzymes for both of them). Neither of my girls ever cough or wheeze. They are both extremely healthy lungwise. My 11 year old's Fev1 is 122% and my 7 year old's is 150%. I sometimes wonder if I am forcing them to waste a lot of time in their lives by making them do treatments. However, for me, the fear of not doing them outweighs the possible wasted time. I also believe it's good to keep them in a routine. It's a lot easier to learn routine as a child than as an adult. The girls do skip treatments, I won't lie. But they always do at least one a day and the majority of time they do two (one vest and one acapella, breathing treaments both times).

I also related to what you were saying about lying to the dr. I had to laugh because I used to tell the dr that the girls were doing two treatments a day when we were only doing one. The dr would have totally let me have it if he knew otherwise. But when the girls got old enough to understand what was going on I had a decision to make. I had to either tell the truth about doing one or start doing two. I was not going to teach the girls to lie. So we started doing two treatments instead. It helped a lot when we got the acapella because they can do that before school and it doesn't take nearly as long as the vest.

Best of luck whatever you decide. I know it's a hard call. Also I have to say that I am very proud of the way this post has gone. When I first read your question I thought to myself, oh no... she's gonna get hell for this question.... I'm really glad that didn't happen and I'm proud of everyone for being nice.

 

[ReneeP]

not doing CPTs

I find your question interesting because I have often asked myself the same thing. I have 2 daugters with CF (both Double Delta F508). I really can't say if the vest or acapella do them any good at all. I can't tell a difference whether they do it or not. The same for all the other meds (minus the nasal sprays for my younger one...she does need those because she has horrible sinus problems...and enzymes for both of them). Neither of my girls ever cough or wheeze. They are both extremely healthy lungwise. My 11 year old's Fev1 is 122% and my 7 year old's is 150%. I sometimes wonder if I am forcing them to waste a lot of time in their lives by making them do treatments. However, for me, the fear of not doing them outweighs the possible wasted time. I also believe it's good to keep them in a routine. It's a lot easier to learn routine as a child than as an adult. The girls do skip treatments, I won't lie. But they always do at least one a day and the majority of time they do two (one vest and one acapella, breathing treaments both times).

I also related to what you were saying about lying to the dr. I had to laugh because I used to tell the dr that the girls were doing two treatments a day when we were only doing one. The dr would have totally let me have it if he knew otherwise. But when the girls got old enough to understand what was going on I had a decision to make. I had to either tell the truth about doing one or start doing two. I was not going to teach the girls to lie. So we started doing two treatments instead. It helped a lot when we got the acapella because they can do that before school and it doesn't take nearly as long as the vest.

Best of luck whatever you decide. I know it's a hard call. Also I have to say that I am very proud of the way this post has gone. When I first read your question I thought to myself, oh no... she's gonna get hell for this question.... I'm really glad that didn't happen and I'm proud of everyone for being nice.

 

[ReneeP]

not doing CPTs

I find your question interesting because I have often asked myself the same thing. I have 2 daugters with CF (both Double Delta F508). I really can't say if the vest or acapella do them any good at all. I can't tell a difference whether they do it or not. The same for all the other meds (minus the nasal sprays for my younger one...she does need those because she has horrible sinus problems...and enzymes for both of them). Neither of my girls ever cough or wheeze. They are both extremely healthy lungwise. My 11 year old's Fev1 is 122% and my 7 year old's is 150%. I sometimes wonder if I am forcing them to waste a lot of time in their lives by making them do treatments. However, for me, the fear of not doing them outweighs the possible wasted time. I also believe it's good to keep them in a routine. It's a lot easier to learn routine as a child than as an adult. The girls do skip treatments, I won't lie. But they always do at least one a day and the majority of time they do two (one vest and one acapella, breathing treaments both times).

I also related to what you were saying about lying to the dr. I had to laugh because I used to tell the dr that the girls were doing two treatments a day when we were only doing one. The dr would have totally let me have it if he knew otherwise. But when the girls got old enough to understand what was going on I had a decision to make. I had to either tell the truth about doing one or start doing two. I was not going to teach the girls to lie. So we started doing two treatments instead. It helped a lot when we got the acapella because they can do that before school and it doesn't take nearly as long as the vest.

Best of luck whatever you decide. I know it's a hard call. Also I have to say that I am very proud of the way this post has gone. When I first read your question I thought to myself, oh no... she's gonna get hell for this question.... I'm really glad that didn't happen and I'm proud of everyone for being nice.

 

[Anns]

not doing CPTs

Hey Renee,<br>
thanks for the post and your words.  WOW, your girls are
fantastic, 150%...has it always been that way.  I was thinking
anything over 100 was great.  But when I look back at his
FEVs, they started at 90s, do u think age has anything to do w/
this, like the older they are the more they are able to perform the
tests and understand what to do.  I know when they first
started doing them on him, they said the #s would not be accurate,
because he was to young to do it correctly.<br>
Anyway thanks again, maybe I should get in the routine to do them,
to get that FEV1 up more than just 116%.<br>
Best of continued health to u...i have one son w/ and one w/o and I
truly believe CF has made me a better person, because I so cherish
and love them more I feel because of how CF has affected us.<br>
Lori

 

[Anns]

not doing CPTs

Hey Renee,<br>
thanks for the post and your words.  WOW, your girls are
fantastic, 150%...has it always been that way.  I was thinking
anything over 100 was great.  But when I look back at his
FEVs, they started at 90s, do u think age has anything to do w/
this, like the older they are the more they are able to perform the
tests and understand what to do.  I know when they first
started doing them on him, they said the #s would not be accurate,
because he was to young to do it correctly.<br>
Anyway thanks again, maybe I should get in the routine to do them,
to get that FEV1 up more than just 116%.<br>
Best of continued health to u...i have one son w/ and one w/o and I
truly believe CF has made me a better person, because I so cherish
and love them more I feel because of how CF has affected us.<br>
Lori

 

[Anns]

not doing CPTs

Hey Renee,<br>
thanks for the post and your words.  WOW, your girls are
fantastic, 150%...has it always been that way.  I was thinking
anything over 100 was great.  But when I look back at his
FEVs, they started at 90s, do u think age has anything to do w/
this, like the older they are the more they are able to perform the
tests and understand what to do.  I know when they first
started doing them on him, they said the #s would not be accurate,
because he was to young to do it correctly.<br>
Anyway thanks again, maybe I should get in the routine to do them,
to get that FEV1 up more than just 116%.<br>
Best of continued health to u...i have one son w/ and one w/o and I
truly believe CF has made me a better person, because I so cherish
and love them more I feel because of how CF has affected us.<br>
Lori

 

[wuffles]

not doing CPTs

As a CFer who has never really received much preventative care throughout my life, I agree that it's a good idea to get him to a "CF routine", otherwise it will be much more difficult when he's older. I had manual CPT intermittantly while I was younger (I remember it happening, but I don't remember it happening that often), then once I turned about 12 we started leaving it up to my daily life (which included two sports and playing flute all the time). Sport is my favourite form of airway clearance. Now that I'm 22, I find it difficult to stick with routines when I am sick - meaning PEP 3x day and Tobramycin 2x day. I don't do any nebulised treatments except when I am sick. Tablets I am fine with - I believe this is because I have always taken them since I was small and don't have to force myself.

In saying all that, I approve of the stance my parents and doctors have taken throughout the years as it has allowed me to live my life as "normally" as possible. My PFTs are still 94% but they may still be over 100% if I had been more religious with CPT/other treatments - who really knows.

 

[wuffles]

not doing CPTs

As a CFer who has never really received much preventative care throughout my life, I agree that it's a good idea to get him to a "CF routine", otherwise it will be much more difficult when he's older. I had manual CPT intermittantly while I was younger (I remember it happening, but I don't remember it happening that often), then once I turned about 12 we started leaving it up to my daily life (which included two sports and playing flute all the time). Sport is my favourite form of airway clearance. Now that I'm 22, I find it difficult to stick with routines when I am sick - meaning PEP 3x day and Tobramycin 2x day. I don't do any nebulised treatments except when I am sick. Tablets I am fine with - I believe this is because I have always taken them since I was small and don't have to force myself.

In saying all that, I approve of the stance my parents and doctors have taken throughout the years as it has allowed me to live my life as "normally" as possible. My PFTs are still 94% but they may still be over 100% if I had been more religious with CPT/other treatments - who really knows.

 

[wuffles]

not doing CPTs

As a CFer who has never really received much preventative care throughout my life, I agree that it's a good idea to get him to a "CF routine", otherwise it will be much more difficult when he's older. I had manual CPT intermittantly while I was younger (I remember it happening, but I don't remember it happening that often), then once I turned about 12 we started leaving it up to my daily life (which included two sports and playing flute all the time). Sport is my favourite form of airway clearance. Now that I'm 22, I find it difficult to stick with routines when I am sick - meaning PEP 3x day and Tobramycin 2x day. I don't do any nebulised treatments except when I am sick. Tablets I am fine with - I believe this is because I have always taken them since I was small and don't have to force myself.

In saying all that, I approve of the stance my parents and doctors have taken throughout the years as it has allowed me to live my life as "normally" as possible. My PFTs are still 94% but they may still be over 100% if I had been more religious with CPT/other treatments - who really knows.

 

[ReneeP]

not doing CPTs

Lori,

Regarding your question as to whether their age has anything to do with PFTs, I'd say yes, to a certain extent. Though I'm not sure to what extent. When they are really young (5 or 6) they may not be able to do as well simply because of their age. But I have found the opposite is true once they get older. My younger daughter always does better than my older one. There could be many reasons for that. One is that the older they get the better they are expected to do (meaning that their "expected" is higher). For instance if it's a 6 year old they may only be expected to blow an 89 and when they do they get 100%, but by the time they are 8 they are expected to blow a 92 and if they are still blowing an 89, their lung funtion hasn't really declined but they will no longer be blowing 100% because they were expected to blow higher. They may only get 98% but really nothing has changed except what they were expected to do. (those numbers are completely out of my head...not reality at all...I'm just using them as an example)...I don't know if that made any sense at all. It's easier to say than to write.

Another reason I think there is such a difference in my girls is because my older daughter was undiagnosed until she was 2 1/2 and was very very ill. (pneumonia, constant uncontrolable wheezing, losing weight, etc) until she was finally diagnosed. She almost died of pneumonia when the week she turned 2. She was extremely sick. But once she was diagnosed and started being treated correctly she improved dramatically and has not been hospitalized since her 3rd birthday. She will be 12 in December. My younger daughter was diagnosed before birth and so has always been treated properly and has never had a lung infection (several sinus surgeries though). I guess that does suggest that the treatments are doing something. There was once when we went for 7 days without treatments (that's by far the longest ever) and I could not tell it at all. Neither girl had any problems. But I wouldn't want to make that a habit. We were on a cruise and although we had the vest and stuff with us, the girls were so active and so busy we never slowed down enough to do them. If they had had any problems I would certainly have pushed the issue and make them do the treatments. I think other than one occasion, a weekend is the longest they have ever gone without treatments, and again, that's not a habitial thing. I'm just too scared of what MIGHT happen.

 

[ReneeP]

not doing CPTs

Lori,

Regarding your question as to whether their age has anything to do with PFTs, I'd say yes, to a certain extent. Though I'm not sure to what extent. When they are really young (5 or 6) they may not be able to do as well simply because of their age. But I have found the opposite is true once they get older. My younger daughter always does better than my older one. There could be many reasons for that. One is that the older they get the better they are expected to do (meaning that their "expected" is higher). For instance if it's a 6 year old they may only be expected to blow an 89 and when they do they get 100%, but by the time they are 8 they are expected to blow a 92 and if they are still blowing an 89, their lung funtion hasn't really declined but they will no longer be blowing 100% because they were expected to blow higher. They may only get 98% but really nothing has changed except what they were expected to do. (those numbers are completely out of my head...not reality at all...I'm just using them as an example)...I don't know if that made any sense at all. It's easier to say than to write.

Another reason I think there is such a difference in my girls is because my older daughter was undiagnosed until she was 2 1/2 and was very very ill. (pneumonia, constant uncontrolable wheezing, losing weight, etc) until she was finally diagnosed. She almost died of pneumonia when the week she turned 2. She was extremely sick. But once she was diagnosed and started being treated correctly she improved dramatically and has not been hospitalized since her 3rd birthday. She will be 12 in December. My younger daughter was diagnosed before birth and so has always been treated properly and has never had a lung infection (several sinus surgeries though). I guess that does suggest that the treatments are doing something. There was once when we went for 7 days without treatments (that's by far the longest ever) and I could not tell it at all. Neither girl had any problems. But I wouldn't want to make that a habit. We were on a cruise and although we had the vest and stuff with us, the girls were so active and so busy we never slowed down enough to do them. If they had had any problems I would certainly have pushed the issue and make them do the treatments. I think other than one occasion, a weekend is the longest they have ever gone without treatments, and again, that's not a habitial thing. I'm just too scared of what MIGHT happen.

 

[ReneeP]

not doing CPTs

Lori,

Regarding your question as to whether their age has anything to do with PFTs, I'd say yes, to a certain extent. Though I'm not sure to what extent. When they are really young (5 or 6) they may not be able to do as well simply because of their age. But I have found the opposite is true once they get older. My younger daughter always does better than my older one. There could be many reasons for that. One is that the older they get the better they are expected to do (meaning that their "expected" is higher). For instance if it's a 6 year old they may only be expected to blow an 89 and when they do they get 100%, but by the time they are 8 they are expected to blow a 92 and if they are still blowing an 89, their lung funtion hasn't really declined but they will no longer be blowing 100% because they were expected to blow higher. They may only get 98% but really nothing has changed except what they were expected to do. (those numbers are completely out of my head...not reality at all...I'm just using them as an example)...I don't know if that made any sense at all. It's easier to say than to write.

Another reason I think there is such a difference in my girls is because my older daughter was undiagnosed until she was 2 1/2 and was very very ill. (pneumonia, constant uncontrolable wheezing, losing weight, etc) until she was finally diagnosed. She almost died of pneumonia when the week she turned 2. She was extremely sick. But once she was diagnosed and started being treated correctly she improved dramatically and has not been hospitalized since her 3rd birthday. She will be 12 in December. My younger daughter was diagnosed before birth and so has always been treated properly and has never had a lung infection (several sinus surgeries though). I guess that does suggest that the treatments are doing something. There was once when we went for 7 days without treatments (that's by far the longest ever) and I could not tell it at all. Neither girl had any problems. But I wouldn't want to make that a habit. We were on a cruise and although we had the vest and stuff with us, the girls were so active and so busy we never slowed down enough to do them. If they had had any problems I would certainly have pushed the issue and make them do the treatments. I think other than one occasion, a weekend is the longest they have ever gone without treatments, and again, that's not a habitial thing. I'm just too scared of what MIGHT happen.

 

[Ratatosk]

not doing CPTs

We do treatments 3 times a day -- 4 if ds is coming down with something. He's almost 3 1/2 and he's only missed a treatment once and that's when we were catching a flight back from mexico and I'd hoped to get the middle one in during our layover in Denver, but we got delayed in customs. Our local clinic doesn't suggest treatments until the lungs are affected whereas our clinic in the city stresses 2 minimum -- otherwise 3-4 times a day. When we went to the local clinic -- most of the patients had nasty junky sounding coughs. Clinic in the city -- I rarely hear anyone cough except for a couple of the adult ones.

We want to keep ds as healthy as possibly and we feel cpt is very very important to keeping his lungs healthy. Keeping them clear of mucus and infection.

 

[Ratatosk]

not doing CPTs

We do treatments 3 times a day -- 4 if ds is coming down with something. He's almost 3 1/2 and he's only missed a treatment once and that's when we were catching a flight back from mexico and I'd hoped to get the middle one in during our layover in Denver, but we got delayed in customs. Our local clinic doesn't suggest treatments until the lungs are affected whereas our clinic in the city stresses 2 minimum -- otherwise 3-4 times a day. When we went to the local clinic -- most of the patients had nasty junky sounding coughs. Clinic in the city -- I rarely hear anyone cough except for a couple of the adult ones.

We want to keep ds as healthy as possibly and we feel cpt is very very important to keeping his lungs healthy. Keeping them clear of mucus and infection.