Neb treatments

Mom2Max · Apr 21, 2008

I don't have any insight, but had been wondering the same thing myself. My question is so similar that I didn't want to start a new thread ...

At present, Max isn't on anything (and appears to by symptom free). There are 2 doctors at our cf clinic. When we saw one of these doctors approx 4 months ago, he suggested that we begin pulmozyme since Max was coughing about once per day. Over the next 2 months, my husband and I read about it & our biggest concern was that it hasn't been "approved" for use in infants. We met with the other doctor during our next visit and he didn't believe that it was necessary that we start him on it ... that we'd just wait to see if any symptoms develop.

I want to be proactive and do as much preventitive measures that we can, but on the other hand, I don't want to expose him to medicines which he simply doesn't need (or I think/hope that he doesn't need).

I guess I am just wanting opinions of how many of you believe that pulmozyme (or saline, or mucomyst, etc) are beneficial as preventitive measures.

Mom2Max · Apr 21, 2008

I don't have any insight, but had been wondering the same thing myself. My question is so similar that I didn't want to start a new thread ...

At present, Max isn't on anything (and appears to by symptom free). There are 2 doctors at our cf clinic. When we saw one of these doctors approx 4 months ago, he suggested that we begin pulmozyme since Max was coughing about once per day. Over the next 2 months, my husband and I read about it & our biggest concern was that it hasn't been "approved" for use in infants. We met with the other doctor during our next visit and he didn't believe that it was necessary that we start him on it ... that we'd just wait to see if any symptoms develop.

I want to be proactive and do as much preventitive measures that we can, but on the other hand, I don't want to expose him to medicines which he simply doesn't need (or I think/hope that he doesn't need).

I guess I am just wanting opinions of how many of you believe that pulmozyme (or saline, or mucomyst, etc) are beneficial as preventitive measures.

Mom2Max · Apr 21, 2008

I don't have any insight, but had been wondering the same thing myself. My question is so similar that I didn't want to start a new thread ...

At present, Max isn't on anything (and appears to by symptom free). There are 2 doctors at our cf clinic. When we saw one of these doctors approx 4 months ago, he suggested that we begin pulmozyme since Max was coughing about once per day. Over the next 2 months, my husband and I read about it & our biggest concern was that it hasn't been "approved" for use in infants. We met with the other doctor during our next visit and he didn't believe that it was necessary that we start him on it ... that we'd just wait to see if any symptoms develop.

I want to be proactive and do as much preventitive measures that we can, but on the other hand, I don't want to expose him to medicines which he simply doesn't need (or I think/hope that he doesn't need).

I guess I am just wanting opinions of how many of you believe that pulmozyme (or saline, or mucomyst, etc) are beneficial as preventitive measures.

Mom2Max · Apr 21, 2008

I don't have any insight, but had been wondering the same thing myself. My question is so similar that I didn't want to start a new thread ...

At present, Max isn't on anything (and appears to by symptom free). There are 2 doctors at our cf clinic. When we saw one of these doctors approx 4 months ago, he suggested that we begin pulmozyme since Max was coughing about once per day. Over the next 2 months, my husband and I read about it & our biggest concern was that it hasn't been "approved" for use in infants. We met with the other doctor during our next visit and he didn't believe that it was necessary that we start him on it ... that we'd just wait to see if any symptoms develop.

I want to be proactive and do as much preventitive measures that we can, but on the other hand, I don't want to expose him to medicines which he simply doesn't need (or I think/hope that he doesn't need).

I guess I am just wanting opinions of how many of you believe that pulmozyme (or saline, or mucomyst, etc) are beneficial as preventitive measures.

Mom2Max · Apr 21, 2008

I don't have any insight, but had been wondering the same thing myself. My question is so similar that I didn't want to start a new thread ...
 
 At present, Max isn't on anything (and appears to by symptom free). There are 2 doctors at our cf clinic. When we saw one of these doctors approx 4 months ago, he suggested that we begin pulmozyme since Max was coughing about once per day. Over the next 2 months, my husband and I read about it & our biggest concern was that it hasn't been "approved" for use in infants. We met with the other doctor during our next visit and he didn't believe that it was necessary that we start him on it ... that we'd just wait to see if any symptoms develop.
 
 I want to be proactive and do as much preventitive measures that we can, but on the other hand, I don't want to expose him to medicines which he simply doesn't need (or I think/hope that he doesn't need).
 
 I guess I am just wanting opinions of how many of you believe that pulmozyme (or saline, or mucomyst, etc) are beneficial as preventitive measures.

MargaritaChic · Apr 22, 2008

My daughter currently has no lung issues. We do nebs and CPT to be proactive. Our clinic gets every CF child on nebs and CPT as early as possible BEFORE there is any lung involvement.

We were at clinic yesterday and I mentioned to Emma's CF doctor about seeing posts on here from parents whose clinics do not do nebs until there is lung involvement. He was very suprised to hear that and just shook his head. He reminded me that the average life expectancy at our clinic is 10 years higher than the national average. I believe that the fact that they take a proactive approach is a huge part of that.

If I were you I would seriously question your child's doctor about why they are not prescribing nebs. Also, Do some research on your own and find out what the experts say. A great doctor to search on is Warren Warwick.

MargaritaChic · Apr 22, 2008

My daughter currently has no lung issues. We do nebs and CPT to be proactive. Our clinic gets every CF child on nebs and CPT as early as possible BEFORE there is any lung involvement.

We were at clinic yesterday and I mentioned to Emma's CF doctor about seeing posts on here from parents whose clinics do not do nebs until there is lung involvement. He was very suprised to hear that and just shook his head. He reminded me that the average life expectancy at our clinic is 10 years higher than the national average. I believe that the fact that they take a proactive approach is a huge part of that.

If I were you I would seriously question your child's doctor about why they are not prescribing nebs. Also, Do some research on your own and find out what the experts say. A great doctor to search on is Warren Warwick.

MargaritaChic · Apr 22, 2008

My daughter currently has no lung issues. We do nebs and CPT to be proactive. Our clinic gets every CF child on nebs and CPT as early as possible BEFORE there is any lung involvement.

We were at clinic yesterday and I mentioned to Emma's CF doctor about seeing posts on here from parents whose clinics do not do nebs until there is lung involvement. He was very suprised to hear that and just shook his head. He reminded me that the average life expectancy at our clinic is 10 years higher than the national average. I believe that the fact that they take a proactive approach is a huge part of that.

If I were you I would seriously question your child's doctor about why they are not prescribing nebs. Also, Do some research on your own and find out what the experts say. A great doctor to search on is Warren Warwick.

MargaritaChic · Apr 22, 2008

My daughter currently has no lung issues. We do nebs and CPT to be proactive. Our clinic gets every CF child on nebs and CPT as early as possible BEFORE there is any lung involvement.

We were at clinic yesterday and I mentioned to Emma's CF doctor about seeing posts on here from parents whose clinics do not do nebs until there is lung involvement. He was very suprised to hear that and just shook his head. He reminded me that the average life expectancy at our clinic is 10 years higher than the national average. I believe that the fact that they take a proactive approach is a huge part of that.

If I were you I would seriously question your child's doctor about why they are not prescribing nebs. Also, Do some research on your own and find out what the experts say. A great doctor to search on is Warren Warwick.

MargaritaChic · Apr 22, 2008

My daughter currently has no lung issues. We do nebs and CPT to be proactive. Our clinic gets every CF child on nebs and CPT as early as possible BEFORE there is any lung involvement.
 
 We were at clinic yesterday and I mentioned to Emma's CF doctor about seeing posts on here from parents whose clinics do not do nebs until there is lung involvement. He was very suprised to hear that and just shook his head. He reminded me that the average life expectancy at our clinic is 10 years higher than the national average. I believe that the fact that they take a proactive approach is a huge part of that.
 
 If I were you I would seriously question your child's doctor about why they are not prescribing nebs. Also, Do some research on your own and find out what the experts say. A great doctor to search on is Warren Warwick.

Ratatosk · Apr 22, 2008

Even something as simple as doing CPT, will keep your son's lungs healthy. We started off doing 15 minutes of beatments 3-4 times a day. We now do the vest 30 minutes twice a day and I beat him in the morning before work/preschool while he's still sleeping.

Our doctor did have us also do duoneb (bronchiodialator), as well, but has always mentioned the importance of being proactive. And when I noticed DS developed a little cough/wheeze from a cold when he was about 6 months old, the doctor's response was that the best thing we could do was to "beat that cold out of him" It seemed to calm DS, so sometimes I'd give him little mini-cpt sessions when I was holding him during church, etc.

Ratatosk · Apr 22, 2008

Even something as simple as doing CPT, will keep your son's lungs healthy. We started off doing 15 minutes of beatments 3-4 times a day. We now do the vest 30 minutes twice a day and I beat him in the morning before work/preschool while he's still sleeping.

Our doctor did have us also do duoneb (bronchiodialator), as well, but has always mentioned the importance of being proactive. And when I noticed DS developed a little cough/wheeze from a cold when he was about 6 months old, the doctor's response was that the best thing we could do was to "beat that cold out of him" It seemed to calm DS, so sometimes I'd give him little mini-cpt sessions when I was holding him during church, etc.

Ratatosk · Apr 22, 2008

Even something as simple as doing CPT, will keep your son's lungs healthy. We started off doing 15 minutes of beatments 3-4 times a day. We now do the vest 30 minutes twice a day and I beat him in the morning before work/preschool while he's still sleeping.

Our doctor did have us also do duoneb (bronchiodialator), as well, but has always mentioned the importance of being proactive. And when I noticed DS developed a little cough/wheeze from a cold when he was about 6 months old, the doctor's response was that the best thing we could do was to "beat that cold out of him" It seemed to calm DS, so sometimes I'd give him little mini-cpt sessions when I was holding him during church, etc.

Ratatosk · Apr 22, 2008

Even something as simple as doing CPT, will keep your son's lungs healthy. We started off doing 15 minutes of beatments 3-4 times a day. We now do the vest 30 minutes twice a day and I beat him in the morning before work/preschool while he's still sleeping.

Our doctor did have us also do duoneb (bronchiodialator), as well, but has always mentioned the importance of being proactive. And when I noticed DS developed a little cough/wheeze from a cold when he was about 6 months old, the doctor's response was that the best thing we could do was to "beat that cold out of him" It seemed to calm DS, so sometimes I'd give him little mini-cpt sessions when I was holding him during church, etc.

Ratatosk · Apr 22, 2008

Even something as simple as doing CPT, will keep your son's lungs healthy. We started off doing 15 minutes of beatments 3-4 times a day. We now do the vest 30 minutes twice a day and I beat him in the morning before work/preschool while he's still sleeping.
 
 Our doctor did have us also do duoneb (bronchiodialator), as well, but has always mentioned the importance of being proactive. And when I noticed DS developed a little cough/wheeze from a cold when he was about 6 months old, the doctor's response was that the best thing we could do was to "beat that cold out of him" It seemed to calm DS, so sometimes I'd give him little mini-cpt sessions when I was holding him during church, etc.

grassisgreener · Apr 23, 2008

My daughter is almost 5 and does not do any neb treatments. I know this is unusual and we get the third degree from some parents over it. However, her lung functions continue to be above average and on CT or x-ray her lungs have always looked like a child's w/o CF.

I have consulted with DR. Warwick over this because I am definately a proactive person (I will explain how in a moment) and interestingly what I got from him was not the same as what has been passed along from many parents. To me, he was not a big fan of "blanket" treatments. He seemed to feel that CF doesn't effect everyone the same so not everyone should be treated the same. He also didn't seem to be a big fan of pulmozyme and has written a paper to explain why. The one thing he seemed to stress the most was CPT. Now, as I said, my daughter does not have any lung symptoms so I cannot say that he feels this way for everyone, her second mutation also gives her more protein function than double df508's.

I am being proactive in her care by treating her nutritionally. I felt led to do this immediately after her diagnosis. At that time, the resources were limited but they have grown over the years! It takes a lot of money and time but it is worth it because she has done so well.

Oh ya, I bring up pulmozyme at every appointment because if there is ever ANY change in my daughter or the research I want to know.

Just wanted to share a little of our experiences because they are definately not typical!

grassisgreener · Apr 23, 2008

My daughter is almost 5 and does not do any neb treatments. I know this is unusual and we get the third degree from some parents over it. However, her lung functions continue to be above average and on CT or x-ray her lungs have always looked like a child's w/o CF.

I have consulted with DR. Warwick over this because I am definately a proactive person (I will explain how in a moment) and interestingly what I got from him was not the same as what has been passed along from many parents. To me, he was not a big fan of "blanket" treatments. He seemed to feel that CF doesn't effect everyone the same so not everyone should be treated the same. He also didn't seem to be a big fan of pulmozyme and has written a paper to explain why. The one thing he seemed to stress the most was CPT. Now, as I said, my daughter does not have any lung symptoms so I cannot say that he feels this way for everyone, her second mutation also gives her more protein function than double df508's.

I am being proactive in her care by treating her nutritionally. I felt led to do this immediately after her diagnosis. At that time, the resources were limited but they have grown over the years! It takes a lot of money and time but it is worth it because she has done so well.

Oh ya, I bring up pulmozyme at every appointment because if there is ever ANY change in my daughter or the research I want to know.

Just wanted to share a little of our experiences because they are definately not typical!

grassisgreener · Apr 23, 2008

My daughter is almost 5 and does not do any neb treatments. I know this is unusual and we get the third degree from some parents over it. However, her lung functions continue to be above average and on CT or x-ray her lungs have always looked like a child's w/o CF.

I have consulted with DR. Warwick over this because I am definately a proactive person (I will explain how in a moment) and interestingly what I got from him was not the same as what has been passed along from many parents. To me, he was not a big fan of "blanket" treatments. He seemed to feel that CF doesn't effect everyone the same so not everyone should be treated the same. He also didn't seem to be a big fan of pulmozyme and has written a paper to explain why. The one thing he seemed to stress the most was CPT. Now, as I said, my daughter does not have any lung symptoms so I cannot say that he feels this way for everyone, her second mutation also gives her more protein function than double df508's.

I am being proactive in her care by treating her nutritionally. I felt led to do this immediately after her diagnosis. At that time, the resources were limited but they have grown over the years! It takes a lot of money and time but it is worth it because she has done so well.

Oh ya, I bring up pulmozyme at every appointment because if there is ever ANY change in my daughter or the research I want to know.

Just wanted to share a little of our experiences because they are definately not typical!

grassisgreener · Apr 23, 2008

My daughter is almost 5 and does not do any neb treatments. I know this is unusual and we get the third degree from some parents over it. However, her lung functions continue to be above average and on CT or x-ray her lungs have always looked like a child's w/o CF.

I have consulted with DR. Warwick over this because I am definately a proactive person (I will explain how in a moment) and interestingly what I got from him was not the same as what has been passed along from many parents. To me, he was not a big fan of "blanket" treatments. He seemed to feel that CF doesn't effect everyone the same so not everyone should be treated the same. He also didn't seem to be a big fan of pulmozyme and has written a paper to explain why. The one thing he seemed to stress the most was CPT. Now, as I said, my daughter does not have any lung symptoms so I cannot say that he feels this way for everyone, her second mutation also gives her more protein function than double df508's.

I am being proactive in her care by treating her nutritionally. I felt led to do this immediately after her diagnosis. At that time, the resources were limited but they have grown over the years! It takes a lot of money and time but it is worth it because she has done so well.

Oh ya, I bring up pulmozyme at every appointment because if there is ever ANY change in my daughter or the research I want to know.

Just wanted to share a little of our experiences because they are definately not typical!

grassisgreener · Apr 23, 2008

My daughter is almost 5 and does not do any neb treatments. I know this is unusual and we get the third degree from some parents over it. However, her lung functions continue to be above average and on CT or x-ray her lungs have always looked like a child's w/o CF.
 
 I have consulted with DR. Warwick over this because I am definately a proactive person (I will explain how in a moment) and interestingly what I got from him was not the same as what has been passed along from many parents. To me, he was not a big fan of "blanket" treatments. He seemed to feel that CF doesn't effect everyone the same so not everyone should be treated the same. He also didn't seem to be a big fan of pulmozyme and has written a paper to explain why. The one thing he seemed to stress the most was CPT. Now, as I said, my daughter does not have any lung symptoms so I cannot say that he feels this way for everyone, her second mutation also gives her more protein function than double df508's.
 
 I am being proactive in her care by treating her nutritionally. I felt led to do this immediately after her diagnosis. At that time, the resources were limited but they have grown over the years! It takes a lot of money and time but it is worth it because she has done so well.
 
 Oh ya, I bring up pulmozyme at every appointment because if there is ever ANY change in my daughter or the research I want to know.
 
 Just wanted to share a little of our experiences because they are definately not typical!

Neb treatments

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