Starting Pulmozyme

kitomd21 · Oct 23, 2009

A little background...we started our 16 month old on Pulmozyme four days ago due to "changes" in her XRAYs. Her doctor stressed that we start her on Pulmozyme as she believes the "changes" are due to mucus build-up...she has cultured staph since diagnosis at two months old. Her doctor doesn't believe the changes are due to infection at this time, but stressed the use of Pulmozyme to clear the suspected mucus. A bronchoscopy wasn't performed due to insurance issues. She seldom coughed prior to starting the Pulmozyme...which her doctor seems virtually incredulous about. She warned us that the coughing would increase upon starting Pulmozyme and not to be alarmed because it can seem quite severe, but will subside.

Questions -

1. Why isn't she coughing any more than prior to starting treatment?!

2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often.

3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure.

4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus?

Thanks!

kitomd21 · Oct 23, 2009

A little background...we started our 16 month old on Pulmozyme four days ago due to "changes" in her XRAYs. Her doctor stressed that we start her on Pulmozyme as she believes the "changes" are due to mucus build-up...she has cultured staph since diagnosis at two months old. Her doctor doesn't believe the changes are due to infection at this time, but stressed the use of Pulmozyme to clear the suspected mucus. A bronchoscopy wasn't performed due to insurance issues. She seldom coughed prior to starting the Pulmozyme...which her doctor seems virtually incredulous about. She warned us that the coughing would increase upon starting Pulmozyme and not to be alarmed because it can seem quite severe, but will subside.

Questions -

1. Why isn't she coughing any more than prior to starting treatment?!

2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often.

3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure.

4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus?

Thanks!

kitomd21 · Oct 23, 2009

A little background...we started our 16 month old on Pulmozyme four days ago due to "changes" in her XRAYs. Her doctor stressed that we start her on Pulmozyme as she believes the "changes" are due to mucus build-up...she has cultured staph since diagnosis at two months old. Her doctor doesn't believe the changes are due to infection at this time, but stressed the use of Pulmozyme to clear the suspected mucus. A bronchoscopy wasn't performed due to insurance issues. She seldom coughed prior to starting the Pulmozyme...which her doctor seems virtually incredulous about. She warned us that the coughing would increase upon starting Pulmozyme and not to be alarmed because it can seem quite severe, but will subside.

Questions -

1. Why isn't she coughing any more than prior to starting treatment?!

2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often.

3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure.

4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus?

Thanks!

kitomd21 · Oct 23, 2009

A little background...we started our 16 month old on Pulmozyme four days ago due to "changes" in her XRAYs. Her doctor stressed that we start her on Pulmozyme as she believes the "changes" are due to mucus build-up...she has cultured staph since diagnosis at two months old. Her doctor doesn't believe the changes are due to infection at this time, but stressed the use of Pulmozyme to clear the suspected mucus. A bronchoscopy wasn't performed due to insurance issues. She seldom coughed prior to starting the Pulmozyme...which her doctor seems virtually incredulous about. She warned us that the coughing would increase upon starting Pulmozyme and not to be alarmed because it can seem quite severe, but will subside.

Questions -

1. Why isn't she coughing any more than prior to starting treatment?!

2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often.

3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure.

4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus?

Thanks!

kitomd21 · Oct 23, 2009

A little background...we started our 16 month old on Pulmozyme four days ago due to "changes" in her XRAYs. Her doctor stressed that we start her on Pulmozyme as she believes the "changes" are due to mucus build-up...she has cultured staph since diagnosis at two months old. Her doctor doesn't believe the changes are due to infection at this time, but stressed the use of Pulmozyme to clear the suspected mucus. A bronchoscopy wasn't performed due to insurance issues. She seldom coughed prior to starting the Pulmozyme...which her doctor seems virtually incredulous about. She warned us that the coughing would increase upon starting Pulmozyme and not to be alarmed because it can seem quite severe, but will subside.
 
 Questions -
 
 1. Why isn't she coughing any more than prior to starting treatment?!
 
 2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often.
 
 3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure.
 
 4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus?
 
 Thanks!

Mommafirst · Oct 23, 2009

I'll have a go at your questions...

1. Why isn't she coughing any more than prior to starting treatment?! I don't know, my daughter doesn't always cough when she has mucus in her lung either.

2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often. This was not my understanding. We have gotten cultures that say "normal flora" and then we have gotten cultures that say staph, so I've always been led to believe that staph is not considered normal flora. 

3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure. Well I do often think that the assumption of this being a CF patient makes everyone listen more carefully and look more thoroughly, but the techs job is look at these films. I'm not sure how something could be there that isn't really there.

4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus? Alyssa doesn't cough with the Pulmozyme either. But I still see a lot of benefits, like being able to clear a cold/cough more easily.

Mommafirst · Oct 23, 2009

I'll have a go at your questions...

1. Why isn't she coughing any more than prior to starting treatment?! I don't know, my daughter doesn't always cough when she has mucus in her lung either.

2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often. This was not my understanding. We have gotten cultures that say "normal flora" and then we have gotten cultures that say staph, so I've always been led to believe that staph is not considered normal flora. 

3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure. Well I do often think that the assumption of this being a CF patient makes everyone listen more carefully and look more thoroughly, but the techs job is look at these films. I'm not sure how something could be there that isn't really there.

4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus? Alyssa doesn't cough with the Pulmozyme either. But I still see a lot of benefits, like being able to clear a cold/cough more easily.

Mommafirst · Oct 23, 2009

I'll have a go at your questions...

1. Why isn't she coughing any more than prior to starting treatment?! I don't know, my daughter doesn't always cough when she has mucus in her lung either.

2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often. This was not my understanding. We have gotten cultures that say "normal flora" and then we have gotten cultures that say staph, so I've always been led to believe that staph is not considered normal flora. 

3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure. Well I do often think that the assumption of this being a CF patient makes everyone listen more carefully and look more thoroughly, but the techs job is look at these films. I'm not sure how something could be there that isn't really there.

4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus? Alyssa doesn't cough with the Pulmozyme either. But I still see a lot of benefits, like being able to clear a cold/cough more easily.

Mommafirst · Oct 23, 2009

I'll have a go at your questions...

1. Why isn't she coughing any more than prior to starting treatment?! I don't know, my daughter doesn't always cough when she has mucus in her lung either.

2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often. This was not my understanding. We have gotten cultures that say "normal flora" and then we have gotten cultures that say staph, so I've always been led to believe that staph is not considered normal flora. 

3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure. Well I do often think that the assumption of this being a CF patient makes everyone listen more carefully and look more thoroughly, but the techs job is look at these films. I'm not sure how something could be there that isn't really there.

4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus? Alyssa doesn't cough with the Pulmozyme either. But I still see a lot of benefits, like being able to clear a cold/cough more easily.

Mommafirst · Oct 23, 2009

I'll have a go at your questions...
 
 1. Why isn't she coughing any more than prior to starting treatment?! I don't know, my daughter doesn't always cough when she has mucus in her lung either.
 
 2. Don't all individuals (CF or not) culture staph as "normal" oropharyngeal flora? I understand that CF makes staph infections more complicated, however, her level of staph certainly isn't causing increased respiratory symptoms as they pertain to coughing more often. This was not my understanding. We have gotten cultures that say "normal flora" and then we have gotten cultures that say staph, so I've always been led to believe that staph is not considered normal flora. 
 
 3. I am not a parent in denial - I understand the cycle of inflammation/infection and fibrosing of lung tissue - however, what are your thoughts regarding radiologist reviews with a given history of CF and "seeing what they want to see" in the radiograph? No definitive answers on this one - just opinions, I'm sure. Well I do often think that the assumption of this being a CF patient makes everyone listen more carefully and look more thoroughly, but the techs job is look at these films. I'm not sure how something could be there that isn't really there.
 
 4. How immediate upon starting Pulmozyme did you or your little one experience an increase in cough/clearing of mucus? Alyssa doesn't cough with the Pulmozyme either. But I still see a lot of benefits, like being able to clear a cold/cough more easily.

saveferris2009 · Oct 23, 2009

Pulmozyme is a great preventative.

If you have CF, you have an increased amount of mucus. Or you will down the line.

Prevention is everything with this disease. If you are preventative vs. treating after symptoms arise, you are extending the life of your child. Bottomline

saveferris2009 · Oct 23, 2009

Pulmozyme is a great preventative.

If you have CF, you have an increased amount of mucus. Or you will down the line.

Prevention is everything with this disease. If you are preventative vs. treating after symptoms arise, you are extending the life of your child. Bottomline

saveferris2009 · Oct 23, 2009

Pulmozyme is a great preventative.

If you have CF, you have an increased amount of mucus. Or you will down the line.

Prevention is everything with this disease. If you are preventative vs. treating after symptoms arise, you are extending the life of your child. Bottomline

saveferris2009 · Oct 23, 2009

Pulmozyme is a great preventative.

If you have CF, you have an increased amount of mucus. Or you will down the line.

Prevention is everything with this disease. If you are preventative vs. treating after symptoms arise, you are extending the life of your child. Bottomline

saveferris2009 · Oct 23, 2009

Pulmozyme is a great preventative.
 
 If you have CF, you have an increased amount of mucus. Or you will down the line.
 
 Prevention is everything with this disease. If you are preventative vs. treating after symptoms arise, you are extending the life of your child. Bottomline

ashmomo · Oct 23, 2009

My 5 month old is on Pulmozyme as well as a few other nebulized meds. She has had a little cough since birth pretty much. I can't say that Pulmozyme makes her cough worse...but I am sure it can as it loosens up the mucous. Yet she is only 16 months old and does not know how to purposely cough up mucous. My four year old still doesn't get that concept.
Doctors can tell you how something 'may' affect your little one, but it is different in every patient.
Not ALL CFers always culture staph. My daughter, 4 years, just cultured Staph for the first time a few months ago. It is VERY common for CFers to culture it, but it is not a given. It will usually be treated only if there are symptoms to go along with it.
My 5 mo old had a bronch in the hospital which showed lots of thick mucous in her lungs. The culture came back clean though...she wasn't culturing any bacteria. (she now has cultured staph and pseudomonas though) They did the bronch due to the fact that her x-rays showed a 'pattern' in her lungs. (Possibly what they are seeing in your little one's x-rays?)

PM me if you have any other ?'s or just need to talk. Hope I helped!

ashmomo · Oct 23, 2009

My 5 month old is on Pulmozyme as well as a few other nebulized meds. She has had a little cough since birth pretty much. I can't say that Pulmozyme makes her cough worse...but I am sure it can as it loosens up the mucous. Yet she is only 16 months old and does not know how to purposely cough up mucous. My four year old still doesn't get that concept.
Doctors can tell you how something 'may' affect your little one, but it is different in every patient.
Not ALL CFers always culture staph. My daughter, 4 years, just cultured Staph for the first time a few months ago. It is VERY common for CFers to culture it, but it is not a given. It will usually be treated only if there are symptoms to go along with it.
My 5 mo old had a bronch in the hospital which showed lots of thick mucous in her lungs. The culture came back clean though...she wasn't culturing any bacteria. (she now has cultured staph and pseudomonas though) They did the bronch due to the fact that her x-rays showed a 'pattern' in her lungs. (Possibly what they are seeing in your little one's x-rays?)

PM me if you have any other ?'s or just need to talk. Hope I helped!

ashmomo · Oct 23, 2009

My 5 month old is on Pulmozyme as well as a few other nebulized meds. She has had a little cough since birth pretty much. I can't say that Pulmozyme makes her cough worse...but I am sure it can as it loosens up the mucous. Yet she is only 16 months old and does not know how to purposely cough up mucous. My four year old still doesn't get that concept.
Doctors can tell you how something 'may' affect your little one, but it is different in every patient.
Not ALL CFers always culture staph. My daughter, 4 years, just cultured Staph for the first time a few months ago. It is VERY common for CFers to culture it, but it is not a given. It will usually be treated only if there are symptoms to go along with it.
My 5 mo old had a bronch in the hospital which showed lots of thick mucous in her lungs. The culture came back clean though...she wasn't culturing any bacteria. (she now has cultured staph and pseudomonas though) They did the bronch due to the fact that her x-rays showed a 'pattern' in her lungs. (Possibly what they are seeing in your little one's x-rays?)

PM me if you have any other ?'s or just need to talk. Hope I helped!

ashmomo · Oct 23, 2009

My 5 month old is on Pulmozyme as well as a few other nebulized meds. She has had a little cough since birth pretty much. I can't say that Pulmozyme makes her cough worse...but I am sure it can as it loosens up the mucous. Yet she is only 16 months old and does not know how to purposely cough up mucous. My four year old still doesn't get that concept.
Doctors can tell you how something 'may' affect your little one, but it is different in every patient.
Not ALL CFers always culture staph. My daughter, 4 years, just cultured Staph for the first time a few months ago. It is VERY common for CFers to culture it, but it is not a given. It will usually be treated only if there are symptoms to go along with it.
My 5 mo old had a bronch in the hospital which showed lots of thick mucous in her lungs. The culture came back clean though...she wasn't culturing any bacteria. (she now has cultured staph and pseudomonas though) They did the bronch due to the fact that her x-rays showed a 'pattern' in her lungs. (Possibly what they are seeing in your little one's x-rays?)

PM me if you have any other ?'s or just need to talk. Hope I helped!

ashmomo · Oct 23, 2009

My 5 month old is on Pulmozyme as well as a few other nebulized meds. She has had a little cough since birth pretty much. I can't say that Pulmozyme makes her cough worse...but I am sure it can as it loosens up the mucous. Yet she is only 16 months old and does not know how to purposely cough up mucous. My four year old still doesn't get that concept.
 Doctors can tell you how something 'may' affect your little one, but it is different in every patient.
 Not ALL CFers always culture staph. My daughter, 4 years, just cultured Staph for the first time a few months ago. It is VERY common for CFers to culture it, but it is not a given. It will usually be treated only if there are symptoms to go along with it.
 My 5 mo old had a bronch in the hospital which showed lots of thick mucous in her lungs. The culture came back clean though...she wasn't culturing any bacteria. (she now has cultured staph and pseudomonas though) They did the bronch due to the fact that her x-rays showed a 'pattern' in her lungs. (Possibly what they are seeing in your little one's x-rays?)
 
 PM me if you have any other ?'s or just need to talk. Hope I helped!

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