Pulmozyme experiences....

robert321

New member
the only effects i've had from pulmozyme are positive ones, but now that you mention it, when i get REALLY cleaned out (which is fairly often when i'm doing everything, i have a really mild case) i get to where i feel sort of funny, it might be something completely different though. i also notice that when i'm taking it like i should every day my mucus isn't only thinner, it has a little bit of a different color and (this is gross, but...) it tastes a little different, i know you get it out asap but you still taste it sometimes
 

robert321

New member
the only effects i've had from pulmozyme are positive ones, but now that you mention it, when i get REALLY cleaned out (which is fairly often when i'm doing everything, i have a really mild case) i get to where i feel sort of funny, it might be something completely different though. i also notice that when i'm taking it like i should every day my mucus isn't only thinner, it has a little bit of a different color and (this is gross, but...) it tastes a little different, i know you get it out asap but you still taste it sometimes
 

robert321

New member
the only effects i've had from pulmozyme are positive ones, but now that you mention it, when i get REALLY cleaned out (which is fairly often when i'm doing everything, i have a really mild case) i get to where i feel sort of funny, it might be something completely different though. i also notice that when i'm taking it like i should every day my mucus isn't only thinner, it has a little bit of a different color and (this is gross, but...) it tastes a little different, i know you get it out asap but you still taste it sometimes
 

robert321

New member
the only effects i've had from pulmozyme are positive ones, but now that you mention it, when i get REALLY cleaned out (which is fairly often when i'm doing everything, i have a really mild case) i get to where i feel sort of funny, it might be something completely different though. i also notice that when i'm taking it like i should every day my mucus isn't only thinner, it has a little bit of a different color and (this is gross, but...) it tastes a little different, i know you get it out asap but you still taste it sometimes
 

robert321

New member
the only effects i've had from pulmozyme are positive ones, but now that you mention it, when i get REALLY cleaned out (which is fairly often when i'm doing everything, i have a really mild case) i get to where i feel sort of funny, it might be something completely different though. i also notice that when i'm taking it like i should every day my mucus isn't only thinner, it has a little bit of a different color and (this is gross, but...) it tastes a little different, i know you get it out asap but you still taste it sometimes
 

angelsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

It was explained to me that since I didn't have much lung involvement at that point in my progression of the disease, that the mucolytic (mucus cutting) property of the drug wasn't finding enough mucus to act upon, so it was damaging the lining of my lungs as if THEY were mucus. That explained the blood. We stopped the pulmozyme at that time. That was about 8 years ago. </end quote></div>

Thank you so much for sharing this explanation. I have been wondering about putting my 3 yo wcf on Pulmozyme and this is something I plan to ask her doc about. I see so many posts from parents of young kids who are on it that I was beginning to think maybe we aren't doing everything we should be doing. Maybe this is one reason my child should not be on Pulmozyme at this time. She never coughs up anything and her lung function is good right now.
 

angelsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

It was explained to me that since I didn't have much lung involvement at that point in my progression of the disease, that the mucolytic (mucus cutting) property of the drug wasn't finding enough mucus to act upon, so it was damaging the lining of my lungs as if THEY were mucus. That explained the blood. We stopped the pulmozyme at that time. That was about 8 years ago. </end quote></div>

Thank you so much for sharing this explanation. I have been wondering about putting my 3 yo wcf on Pulmozyme and this is something I plan to ask her doc about. I see so many posts from parents of young kids who are on it that I was beginning to think maybe we aren't doing everything we should be doing. Maybe this is one reason my child should not be on Pulmozyme at this time. She never coughs up anything and her lung function is good right now.
 

angelsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

It was explained to me that since I didn't have much lung involvement at that point in my progression of the disease, that the mucolytic (mucus cutting) property of the drug wasn't finding enough mucus to act upon, so it was damaging the lining of my lungs as if THEY were mucus. That explained the blood. We stopped the pulmozyme at that time. That was about 8 years ago. </end quote></div>

Thank you so much for sharing this explanation. I have been wondering about putting my 3 yo wcf on Pulmozyme and this is something I plan to ask her doc about. I see so many posts from parents of young kids who are on it that I was beginning to think maybe we aren't doing everything we should be doing. Maybe this is one reason my child should not be on Pulmozyme at this time. She never coughs up anything and her lung function is good right now.
 

angelsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

It was explained to me that since I didn't have much lung involvement at that point in my progression of the disease, that the mucolytic (mucus cutting) property of the drug wasn't finding enough mucus to act upon, so it was damaging the lining of my lungs as if THEY were mucus. That explained the blood. We stopped the pulmozyme at that time. That was about 8 years ago. </end quote>

Thank you so much for sharing this explanation. I have been wondering about putting my 3 yo wcf on Pulmozyme and this is something I plan to ask her doc about. I see so many posts from parents of young kids who are on it that I was beginning to think maybe we aren't doing everything we should be doing. Maybe this is one reason my child should not be on Pulmozyme at this time. She never coughs up anything and her lung function is good right now.
 

angelsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lightNlife</b></i>

It was explained to me that since I didn't have much lung involvement at that point in my progression of the disease, that the mucolytic (mucus cutting) property of the drug wasn't finding enough mucus to act upon, so it was damaging the lining of my lungs as if THEY were mucus. That explained the blood. We stopped the pulmozyme at that time. That was about 8 years ago. </end quote>

Thank you so much for sharing this explanation. I have been wondering about putting my 3 yo wcf on Pulmozyme and this is something I plan to ask her doc about. I see so many posts from parents of young kids who are on it that I was beginning to think maybe we aren't doing everything we should be doing. Maybe this is one reason my child should not be on Pulmozyme at this time. She never coughs up anything and her lung function is good right now.
 

CaliSally

New member
I never noticed mucus production with the Pulmo and vest. However, I started hypertonic saline (and kept with the pulmo / vest) and now I cough up a ton of junk. Do you use HS? Maybe that will help the pulmo work better and not cause the irritation? Just a thought.
 

CaliSally

New member
I never noticed mucus production with the Pulmo and vest. However, I started hypertonic saline (and kept with the pulmo / vest) and now I cough up a ton of junk. Do you use HS? Maybe that will help the pulmo work better and not cause the irritation? Just a thought.
 

CaliSally

New member
I never noticed mucus production with the Pulmo and vest. However, I started hypertonic saline (and kept with the pulmo / vest) and now I cough up a ton of junk. Do you use HS? Maybe that will help the pulmo work better and not cause the irritation? Just a thought.
 

CaliSally

New member
I never noticed mucus production with the Pulmo and vest. However, I started hypertonic saline (and kept with the pulmo / vest) and now I cough up a ton of junk. Do you use HS? Maybe that will help the pulmo work better and not cause the irritation? Just a thought.
 

CaliSally

New member
I never noticed mucus production with the Pulmo and vest. However, I started hypertonic saline (and kept with the pulmo / vest) and now I cough up a ton of junk. Do you use HS? Maybe that will help the pulmo work better and not cause the irritation? Just a thought.
 

DEES4

New member
My 3 year old son was on Pulmozyme for about a year. When I found out what it was made from I was grossed out. I started him on inhaled GSH and he was able to get off the Pulmozyme and we have seen much greater results from the GSH. When he was on pulmozyme he still woke up wheezing. coughing and clearing his throat in the mornings. Now he rarely has anything to cough up and he never wheezes. He dosen't get out of breath anymore while playing....I can't say enough good things about GSH. I do know there is alot of contorversy about the GSH but for my son it has been a complete blessing and I am so happy to have found out about it.
Carrie
 

DEES4

New member
My 3 year old son was on Pulmozyme for about a year. When I found out what it was made from I was grossed out. I started him on inhaled GSH and he was able to get off the Pulmozyme and we have seen much greater results from the GSH. When he was on pulmozyme he still woke up wheezing. coughing and clearing his throat in the mornings. Now he rarely has anything to cough up and he never wheezes. He dosen't get out of breath anymore while playing....I can't say enough good things about GSH. I do know there is alot of contorversy about the GSH but for my son it has been a complete blessing and I am so happy to have found out about it.
Carrie
 

DEES4

New member
My 3 year old son was on Pulmozyme for about a year. When I found out what it was made from I was grossed out. I started him on inhaled GSH and he was able to get off the Pulmozyme and we have seen much greater results from the GSH. When he was on pulmozyme he still woke up wheezing. coughing and clearing his throat in the mornings. Now he rarely has anything to cough up and he never wheezes. He dosen't get out of breath anymore while playing....I can't say enough good things about GSH. I do know there is alot of contorversy about the GSH but for my son it has been a complete blessing and I am so happy to have found out about it.
Carrie
 

DEES4

New member
My 3 year old son was on Pulmozyme for about a year. When I found out what it was made from I was grossed out. I started him on inhaled GSH and he was able to get off the Pulmozyme and we have seen much greater results from the GSH. When he was on pulmozyme he still woke up wheezing. coughing and clearing his throat in the mornings. Now he rarely has anything to cough up and he never wheezes. He dosen't get out of breath anymore while playing....I can't say enough good things about GSH. I do know there is alot of contorversy about the GSH but for my son it has been a complete blessing and I am so happy to have found out about it.
Carrie
 

DEES4

New member
My 3 year old son was on Pulmozyme for about a year. When I found out what it was made from I was grossed out. I started him on inhaled GSH and he was able to get off the Pulmozyme and we have seen much greater results from the GSH. When he was on pulmozyme he still woke up wheezing. coughing and clearing his throat in the mornings. Now he rarely has anything to cough up and he never wheezes. He dosen't get out of breath anymore while playing....I can't say enough good things about GSH. I do know there is alot of contorversy about the GSH but for my son it has been a complete blessing and I am so happy to have found out about it.
Carrie
 
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