Preventative measures for lung health

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Melissa75

Administrator
Chris,
<br />In addition to what others are saying, I think it is very important and beneficial to make sure your son does a lot of aerobic exercise.
<br />If he already does lots of sports, make sure he keeps it up, and does modified workouts when he is sick or on the rebound.
<br />If he doesn't do a lot of sports, have him start slow and work up to more. Hydrate and rest too.
<br />Several years ago, I was tired and out of breath walking a block. Although my PFTs are worse now than then, I recently ran four miles. Plus I am having fewer exacerbations. Your son's fitness level/cardiovascular health can strongly influence how he feels--not to mention provide major (and enjoyable) mucus clearance.
<br />
 
A

angelsmom

New member
We went to an accredited cf center upon diagnosis when my daughter was 18 months old. The doctors there have been in practice for 20+ years treating cf patients.

At our first visit, we were told that we would eventually do CPT and get a vest. At every visit thereafter, I always asked when we should start doing CPT. It never seemed to be a priority. I think my daughter was around 3 years old when we finally went to see the RT during a clinic visit and she briefly showed us how to do CPT. It was NEVER stressed to us to do it daily. We were shown a vest but it was left up to us whether or not to order it and given that the doctor didn't seem to be taking the lead and ordering it for us, we didn't.

We switched clinics when my daughter was 5, mostly because our doctor left and went elsewhere and we did not like the other doctor. Our new clinic seemed shocked that we didn't do CPT and didn't have a vest. At our third visit with the new clinic, my daughter's pfts were down and she was admitted -- it was then that we got the vest ordered and we now do it twice a day, with pulmozyme.

I offer you this background to tell you that 1) you are not alone in having a CF doc tell you that your son doesn't need CPT -- surprisingly, there are CF docs out there that are telling their patients this -- I know because we had a doc like this! and 2) since your son is relatively newly diagnosed, it cannot be said enough that as his parent, YOU are his best advocate -- take what you are learning from your own research and contacts with other CF families who have been dealing with CF a long time and bring it to your doc's attention -- ask questions, make them explain things until you understand it. Also, since your son is 14 -- he is able to participate in his own care more than the younger kids, like mine -- get him on board with wanting to take care of himself and keep his lungs healthy.

I have been sort of where you are . . . newly diagnosed and reading about all the treatments kids are doing and wondering why my kid doesn't do the same and wondering if she should be or if we are somehow the "lucky" ones -- well guess what? Here we are now, with one hospitalization behind us that quite possibly could have been prevented if we had been using a vest / preventative measures in the years since diagnosis.

I hope my post is not offensive -- if you do a search for posts by me at this forum -- you will see that I was asking some of the same questions about using a vest YEARS ago and it didn't sink in until my daughter was sitting in a hospital bed. Thank God she is doing wonderfully -- very active, swimming every day, doing her vest!! : )

Wishing you the best.

Sandra
 
A

angelsmom

New member
We went to an accredited cf center upon diagnosis when my daughter was 18 months old. The doctors there have been in practice for 20+ years treating cf patients.

At our first visit, we were told that we would eventually do CPT and get a vest. At every visit thereafter, I always asked when we should start doing CPT. It never seemed to be a priority. I think my daughter was around 3 years old when we finally went to see the RT during a clinic visit and she briefly showed us how to do CPT. It was NEVER stressed to us to do it daily. We were shown a vest but it was left up to us whether or not to order it and given that the doctor didn't seem to be taking the lead and ordering it for us, we didn't.

We switched clinics when my daughter was 5, mostly because our doctor left and went elsewhere and we did not like the other doctor. Our new clinic seemed shocked that we didn't do CPT and didn't have a vest. At our third visit with the new clinic, my daughter's pfts were down and she was admitted -- it was then that we got the vest ordered and we now do it twice a day, with pulmozyme.

I offer you this background to tell you that 1) you are not alone in having a CF doc tell you that your son doesn't need CPT -- surprisingly, there are CF docs out there that are telling their patients this -- I know because we had a doc like this! and 2) since your son is relatively newly diagnosed, it cannot be said enough that as his parent, YOU are his best advocate -- take what you are learning from your own research and contacts with other CF families who have been dealing with CF a long time and bring it to your doc's attention -- ask questions, make them explain things until you understand it. Also, since your son is 14 -- he is able to participate in his own care more than the younger kids, like mine -- get him on board with wanting to take care of himself and keep his lungs healthy.

I have been sort of where you are . . . newly diagnosed and reading about all the treatments kids are doing and wondering why my kid doesn't do the same and wondering if she should be or if we are somehow the "lucky" ones -- well guess what? Here we are now, with one hospitalization behind us that quite possibly could have been prevented if we had been using a vest / preventative measures in the years since diagnosis.

I hope my post is not offensive -- if you do a search for posts by me at this forum -- you will see that I was asking some of the same questions about using a vest YEARS ago and it didn't sink in until my daughter was sitting in a hospital bed. Thank God she is doing wonderfully -- very active, swimming every day, doing her vest!! : )

Wishing you the best.

Sandra
 
A

angelsmom

New member
We went to an accredited cf center upon diagnosis when my daughter was 18 months old. The doctors there have been in practice for 20+ years treating cf patients.
<br />
<br />At our first visit, we were told that we would eventually do CPT and get a vest. At every visit thereafter, I always asked when we should start doing CPT. It never seemed to be a priority. I think my daughter was around 3 years old when we finally went to see the RT during a clinic visit and she briefly showed us how to do CPT. It was NEVER stressed to us to do it daily. We were shown a vest but it was left up to us whether or not to order it and given that the doctor didn't seem to be taking the lead and ordering it for us, we didn't.
<br />
<br />We switched clinics when my daughter was 5, mostly because our doctor left and went elsewhere and we did not like the other doctor. Our new clinic seemed shocked that we didn't do CPT and didn't have a vest. At our third visit with the new clinic, my daughter's pfts were down and she was admitted -- it was then that we got the vest ordered and we now do it twice a day, with pulmozyme.
<br />
<br />I offer you this background to tell you that 1) you are not alone in having a CF doc tell you that your son doesn't need CPT -- surprisingly, there are CF docs out there that are telling their patients this -- I know because we had a doc like this! and 2) since your son is relatively newly diagnosed, it cannot be said enough that as his parent, YOU are his best advocate -- take what you are learning from your own research and contacts with other CF families who have been dealing with CF a long time and bring it to your doc's attention -- ask questions, make them explain things until you understand it. Also, since your son is 14 -- he is able to participate in his own care more than the younger kids, like mine -- get him on board with wanting to take care of himself and keep his lungs healthy.
<br />
<br />I have been sort of where you are . . . newly diagnosed and reading about all the treatments kids are doing and wondering why my kid doesn't do the same and wondering if she should be or if we are somehow the "lucky" ones -- well guess what? Here we are now, with one hospitalization behind us that quite possibly could have been prevented if we had been using a vest / preventative measures in the years since diagnosis.
<br />
<br />I hope my post is not offensive -- if you do a search for posts by me at this forum -- you will see that I was asking some of the same questions about using a vest YEARS ago and it didn't sink in until my daughter was sitting in a hospital bed. Thank God she is doing wonderfully -- very active, swimming every day, doing her vest!! : )
<br />
<br />Wishing you the best.
<br />
<br />Sandra
 
E

edan

Guest
We found out my DD has CF only 3 months ago. She is 3.5. We only found out because my husband and I were thinking of having another baby so my OB had me do the CF carrier testing. I was positive as a carrier (df508). So my husband was tested. Of course he is a carrier (3849+10kbc->t) and so we had her tested as a precaution. She has NEVER had a chest cold. Was on antibiotics one time for a sinus infection. No GI problems. Nothing!!

So, follow up tests showed normal xray. There is no mucus buildup....yet. But I know some others with her exact mutations and it is only a matter of time before she progresses.

So, we do CPT 1x/day and xopanex 1x/day. CPT 2-3 times a day with an upper respiratory infection. My theory is we need to keep the mucus buildup to a minimum so that she doesn't build an enviroment that pseudomonas and other bacteria will want to make their home. And if there is a cure one day or at least drugs that will arrest the damage progression, I want her to be in the best shape possible to receive these.

Also, the vest is on order and after fighting with the insurance company it has just been approved this week. I plan to still do CPT 1x/day even with the vest.

Hope this helps,

Edan
 
E

edan

Guest
We found out my DD has CF only 3 months ago. She is 3.5. We only found out because my husband and I were thinking of having another baby so my OB had me do the CF carrier testing. I was positive as a carrier (df508). So my husband was tested. Of course he is a carrier (3849+10kbc->t) and so we had her tested as a precaution. She has NEVER had a chest cold. Was on antibiotics one time for a sinus infection. No GI problems. Nothing!!

So, follow up tests showed normal xray. There is no mucus buildup....yet. But I know some others with her exact mutations and it is only a matter of time before she progresses.

So, we do CPT 1x/day and xopanex 1x/day. CPT 2-3 times a day with an upper respiratory infection. My theory is we need to keep the mucus buildup to a minimum so that she doesn't build an enviroment that pseudomonas and other bacteria will want to make their home. And if there is a cure one day or at least drugs that will arrest the damage progression, I want her to be in the best shape possible to receive these.

Also, the vest is on order and after fighting with the insurance company it has just been approved this week. I plan to still do CPT 1x/day even with the vest.

Hope this helps,

Edan
 
E

edan

Guest
We found out my DD has CF only 3 months ago. She is 3.5. We only found out because my husband and I were thinking of having another baby so my OB had me do the CF carrier testing. I was positive as a carrier (df508). So my husband was tested. Of course he is a carrier (3849+10kbc->t) and so we had her tested as a precaution. She has NEVER had a chest cold. Was on antibiotics one time for a sinus infection. No GI problems. Nothing!!
<br />
<br />So, follow up tests showed normal xray. There is no mucus buildup....yet. But I know some others with her exact mutations and it is only a matter of time before she progresses.
<br />
<br />So, we do CPT 1x/day and xopanex 1x/day. CPT 2-3 times a day with an upper respiratory infection. My theory is we need to keep the mucus buildup to a minimum so that she doesn't build an enviroment that pseudomonas and other bacteria will want to make their home. And if there is a cure one day or at least drugs that will arrest the damage progression, I want her to be in the best shape possible to receive these.
<br />
<br />Also, the vest is on order and after fighting with the insurance company it has just been approved this week. I plan to still do CPT 1x/day even with the vest.
<br />
<br />Hope this helps,
<br />
<br />Edan
 
R

Ratatosk

Administrator
Staff member
Also, I don't know about your child, but DS' nasal mucus is the thickest nastiest stuff I've ever seen. Now we're able to get relief for him via sinus rinses, but when he was a baby we just could NOT get that junk out of his nose to help him breathe better so he can eat. I can't IMAGINE what that stuff would do/grow in his lungs should we not be doing CPT.
 
R

Ratatosk

Administrator
Staff member
Also, I don't know about your child, but DS' nasal mucus is the thickest nastiest stuff I've ever seen. Now we're able to get relief for him via sinus rinses, but when he was a baby we just could NOT get that junk out of his nose to help him breathe better so he can eat. I can't IMAGINE what that stuff would do/grow in his lungs should we not be doing CPT.
 
R

Ratatosk

Administrator
Staff member
Also, I don't know about your child, but DS' nasal mucus is the thickest nastiest stuff I've ever seen. Now we're able to get relief for him via sinus rinses, but when he was a baby we just could NOT get that junk out of his nose to help him breathe better so he can eat. I can't IMAGINE what that stuff would do/grow in his lungs should we not be doing CPT.
 
P

Paige3

New member
Hi Chris, not sure where you are located but what you're saying sounds very similar to what we have been told in regards to our ds 16. He has seen 2 cf docs that are the directors of 2 different cf clinics in our state. He only has one known mutation but has positive sweat test. He is moderately pi and is being treated for this. He also has asthma and lung function numbers similar to your sons. Also complains he is tired all the time.

It is confusing when I see people on here with lung functions much higher and we're being told that his numbers are consistent with asthma and ok, that we shouldn't do anything else at this time. I am starting to think that these numbers aren't ok, even if it is only caused by his asthma. By the way, my son does drink a lot of caffeine to get himself going.
 
P

Paige3

New member
Hi Chris, not sure where you are located but what you're saying sounds very similar to what we have been told in regards to our ds 16. He has seen 2 cf docs that are the directors of 2 different cf clinics in our state. He only has one known mutation but has positive sweat test. He is moderately pi and is being treated for this. He also has asthma and lung function numbers similar to your sons. Also complains he is tired all the time.

It is confusing when I see people on here with lung functions much higher and we're being told that his numbers are consistent with asthma and ok, that we shouldn't do anything else at this time. I am starting to think that these numbers aren't ok, even if it is only caused by his asthma. By the way, my son does drink a lot of caffeine to get himself going.
 
P

Paige3

New member
Hi Chris, not sure where you are located but what you're saying sounds very similar to what we have been told in regards to our ds 16. He has seen 2 cf docs that are the directors of 2 different cf clinics in our state. He only has one known mutation but has positive sweat test. He is moderately pi and is being treated for this. He also has asthma and lung function numbers similar to your sons. Also complains he is tired all the time.
<br />
<br />It is confusing when I see people on here with lung functions much higher and we're being told that his numbers are consistent with asthma and ok, that we shouldn't do anything else at this time. I am starting to think that these numbers aren't ok, even if it is only caused by his asthma. By the way, my son does drink a lot of caffeine to get himself going.
<br />
<br />
<br />
<br />
 
A

auntcob

New member
Thanks everyone!! I just have always had this nagging feeling that more should be done! Some of you have asked--his docs are at the clinic at National Children's. I have started the process for him to be seen at Johns Hopkins for a second opinion.
 
A

auntcob

New member
Thanks everyone!! I just have always had this nagging feeling that more should be done! Some of you have asked--his docs are at the clinic at National Children's. I have started the process for him to be seen at Johns Hopkins for a second opinion.
 
A

auntcob

New member
Thanks everyone!! I just have always had this nagging feeling that more should be done! Some of you have asked--his docs are at the clinic at National Children's. I have started the process for him to be seen at Johns Hopkins for a second opinion.
 
C

crickit715

New member
that really surprises me about childrens national!! wow!! i take my doctor to hopkins and they have her on chest pt 2x daily 30 min sessions with vest, pulmozyme daily and xoepenex 2x daily. they are very firm believers in prevention....if you have any questions about there feel free to ask!! good luck!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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crickit715

New member
that really surprises me about childrens national!! wow!! i take my doctor to hopkins and they have her on chest pt 2x daily 30 min sessions with vest, pulmozyme daily and xoepenex 2x daily. they are very firm believers in prevention....if you have any questions about there feel free to ask!! good luck!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
that really surprises me about childrens national!! wow!! i take my doctor to hopkins and they have her on chest pt 2x daily 30 min sessions with vest, pulmozyme daily and xoepenex 2x daily. they are very firm believers in prevention....if you have any questions about there feel free to ask!! good luck!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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