To Pulmozyme or not?

Z

zoeg

New member
<P>Hello!  </P>
<P>My daughter just turned 6 and at her last clinic they said since she is 6 we can consider adding Pulmozyme to her daily routine.  (Which right now is the vest twice a day, enzymes, and prilosec).  They said it can help with breathing, but Kate doesn't really struggle with that at all- for now.  So my question is, would you do it?  It's hard when they leave it up to us.  I'm not an expert and don't know what to do.  I very much want what is best for her, but I'll admit adding something new to our routine is not looking so great either.  Any thoughts?  I would appreciate it!</P>
<P> </P>
<P>Zoe mom to Kate wCF</P>
 
Z

zoeg

New member
<P>Hello! </P>
<P>My daughter just turned 6 and at her last clinic they said since she is 6 we can consider adding Pulmozyme to her daily routine. (Which right now is the vest twice a day, enzymes, and prilosec). They said it can help with breathing, but Kate doesn't really struggle with that at all- for now. So my question is, would you do it? It's hard when they leave it up to us. I'm not an expert and don't know what to do. I very much want what is best for her, but I'll admit adding something new to our routine is not looking so great either. Any thoughts? I would appreciate it!</P>
<P></P>
<P>Zoe mom to Kate wCF</P>
 
Z

zoeg

New member
<P><BR>Hello! </P>
<P>My daughter just turned 6 and at her last clinic they said since she is 6 we can consider adding Pulmozyme to her daily routine. (Which right now is the vest twice a day, enzymes, and prilosec). They said it can help with breathing, but Kate doesn't really struggle with that at all- for now. So my question is, would you do it? It's hard when they leave it up to us. I'm not an expert and don't know what to do. I very much want what is best for her, but I'll admit adding something new to our routine is not looking so great either. Any thoughts? I would appreciate it!</P>
<P></P>
<P>Zoe mom to Kate wCF</P>
 
E

ehtansky21

New member
I would actually choose Hypertonic Saline Solution over pulmozyme to be honest. My 4 year old has no symptoms either and he is only on hypertonic. I swear that it keeps him healthier, helps him fight off different bugs.... If he does start up with lung issues, we will then add in the pulmozyme.

blessings,
missa
 
E

ehtansky21

New member
I would actually choose Hypertonic Saline Solution over pulmozyme to be honest. My 4 year old has no symptoms either and he is only on hypertonic. I swear that it keeps him healthier, helps him fight off different bugs.... If he does start up with lung issues, we will then add in the pulmozyme.

blessings,
missa
 
E

ehtansky21

New member
I would actually choose Hypertonic Saline Solution over pulmozyme to be honest. My 4 year old has no symptoms either and he is only on hypertonic. I swear that it keeps him healthier, helps him fight off different bugs.... If he does start up with lung issues, we will then add in the pulmozyme.
<br />
<br />blessings,
<br />missa
 
M

Mommafirst

Guest
I think pulmozyme is an amazingly good medicine. We started it when Alyssa was 2, shortly after her first hospitalization. We stayed on it for 9 months and foolishly decided that it wasn't doing any good and we should pull her off of it until she reached the age that it has been studied for (6 and over). In the year we had her off of it, we had three hospitalizations.

PLEASE keep in mind that the age of survival hasn't increased because of sitting around doing nothing waiting for symptoms to show. Its increased because of the knowledge we have about preventative meds. Unfortunately, lung function loss can happen pretty quietly -- just because they show no symptoms doesn't mean their CF isn't impacting their lungs. And once they lose lung function, its often impossible to get it back. Preventative meds like pulmozyme BEFORE issues, are the tools we've been given to extend our children's life. Deciding not to use them because our kids look healthy is denying the good that medical progress has given us.
 
M

Mommafirst

Guest
I think pulmozyme is an amazingly good medicine. We started it when Alyssa was 2, shortly after her first hospitalization. We stayed on it for 9 months and foolishly decided that it wasn't doing any good and we should pull her off of it until she reached the age that it has been studied for (6 and over). In the year we had her off of it, we had three hospitalizations.

PLEASE keep in mind that the age of survival hasn't increased because of sitting around doing nothing waiting for symptoms to show. Its increased because of the knowledge we have about preventative meds. Unfortunately, lung function loss can happen pretty quietly -- just because they show no symptoms doesn't mean their CF isn't impacting their lungs. And once they lose lung function, its often impossible to get it back. Preventative meds like pulmozyme BEFORE issues, are the tools we've been given to extend our children's life. Deciding not to use them because our kids look healthy is denying the good that medical progress has given us.
 
M

Mommafirst

Guest
I think pulmozyme is an amazingly good medicine. We started it when Alyssa was 2, shortly after her first hospitalization. We stayed on it for 9 months and foolishly decided that it wasn't doing any good and we should pull her off of it until she reached the age that it has been studied for (6 and over). In the year we had her off of it, we had three hospitalizations.
<br />
<br />PLEASE keep in mind that the age of survival hasn't increased because of sitting around doing nothing waiting for symptoms to show. Its increased because of the knowledge we have about preventative meds. Unfortunately, lung function loss can happen pretty quietly -- just because they show no symptoms doesn't mean their CF isn't impacting their lungs. And once they lose lung function, its often impossible to get it back. Preventative meds like pulmozyme BEFORE issues, are the tools we've been given to extend our children's life. Deciding not to use them because our kids look healthy is denying the good that medical progress has given us.
 
B

biz

New member
aidans doctor suggested it to us after his past picc line which was almost a year ago. and i completly agreed with her. we did it for 2 weeks and he didnt respond well to it. he got raspy and hoarse and it irritated him. the hypertonic does the same thing to him too. i dont knw why he can tollerate these meds. so we switched to zithromax.(pill form). that has seemed to work best for him. he hasnt had any exhasperations since. however we battle sinus infections. chronic. having a picc line put in next week cause if this last one. i would suggest to try it. proactive is key for CF instead of doing meds when they get sick his doctor strongly thing proactive to prevent is key.good luck
--------------------------------------------------------------------------------------------------------------------
Elizabeth
mama to Aidan 5 w/CF
 
B

biz

New member
aidans doctor suggested it to us after his past picc line which was almost a year ago. and i completly agreed with her. we did it for 2 weeks and he didnt respond well to it. he got raspy and hoarse and it irritated him. the hypertonic does the same thing to him too. i dont knw why he can tollerate these meds. so we switched to zithromax.(pill form). that has seemed to work best for him. he hasnt had any exhasperations since. however we battle sinus infections. chronic. having a picc line put in next week cause if this last one. i would suggest to try it. proactive is key for CF instead of doing meds when they get sick his doctor strongly thing proactive to prevent is key.good luck
--------------------------------------------------------------------------------------------------------------------
Elizabeth
mama to Aidan 5 w/CF
 
B

biz

New member
aidans doctor suggested it to us after his past picc line which was almost a year ago. and i completly agreed with her. we did it for 2 weeks and he didnt respond well to it. he got raspy and hoarse and it irritated him. the hypertonic does the same thing to him too. i dont knw why he can tollerate these meds. so we switched to zithromax.(pill form). that has seemed to work best for him. he hasnt had any exhasperations since. however we battle sinus infections. chronic. having a picc line put in next week cause if this last one. i would suggest to try it. proactive is key for CF instead of doing meds when they get sick his doctor strongly thing proactive to prevent is key.good luck
<br />--------------------------------------------------------------------------------------------------------------------
<br />Elizabeth
<br />mama to Aidan 5 w/CF
 
K

kitomd21

New member
We started DD on Pulmozyme at less than 2 years old. She's tolerated it well. Her doctor saw "changes" in her xray which warranted trying Pulmozyme. Her most recent xray showed improvement somewhere around a year of taking Pulmozyme. We're going to add HTS to her treatments next month. I pushed for the HTS - I want to be as proactive as possible.
 
K

kitomd21

New member
We started DD on Pulmozyme at less than 2 years old. She's tolerated it well. Her doctor saw "changes" in her xray which warranted trying Pulmozyme. Her most recent xray showed improvement somewhere around a year of taking Pulmozyme. We're going to add HTS to her treatments next month. I pushed for the HTS - I want to be as proactive as possible.
 
K

kitomd21

New member
We started DD on Pulmozyme at less than 2 years old. She's tolerated it well. Her doctor saw "changes" in her xray which warranted trying Pulmozyme. Her most recent xray showed improvement somewhere around a year of taking Pulmozyme. We're going to add HTS to her treatments next month. I pushed for the HTS - I want to be as proactive as possible.
 
J

JennyCoulon

New member
Our oldest who is now 12 is on Pulmozyme and has been ever since he was 5. Our youngest son who is 6, just went for his 3 month checkup about a month ago and I asked them about Pulmozyme and when they normally start it. They said that it is very expensive so if you do not have insurance or maybe an insurance that will not cover it they wouldn't push it. They said research shows that Pulmozyme seems to really have an effect on a CFer who has moderate to high respitory symptoms. I can tell you that both of my kids have mild respitory issues and it seems to really help think out the mucus. My youngest always seemed to have thick mucus and it was hard to clear, he started Pulmozyme about 3 weeks ago and I can already see the difference in the thickness of the mucus. I would say to give it a try, I know if the doctors prescribe it, the Pulmozyme makers will actually send you a sample to try. I can see a difference so that is why we have chose to start it and continue with it. Hope this helps.
 
J

JennyCoulon

New member
Our oldest who is now 12 is on Pulmozyme and has been ever since he was 5. Our youngest son who is 6, just went for his 3 month checkup about a month ago and I asked them about Pulmozyme and when they normally start it. They said that it is very expensive so if you do not have insurance or maybe an insurance that will not cover it they wouldn't push it. They said research shows that Pulmozyme seems to really have an effect on a CFer who has moderate to high respitory symptoms. I can tell you that both of my kids have mild respitory issues and it seems to really help think out the mucus. My youngest always seemed to have thick mucus and it was hard to clear, he started Pulmozyme about 3 weeks ago and I can already see the difference in the thickness of the mucus. I would say to give it a try, I know if the doctors prescribe it, the Pulmozyme makers will actually send you a sample to try. I can see a difference so that is why we have chose to start it and continue with it. Hope this helps.
 
J

JennyCoulon

New member
<BR>Our oldest who is now 12 is on Pulmozyme and has been ever since he was 5. Our youngest son who is 6, just went for his 3 month checkup about a month ago and I asked them about Pulmozyme and when they normally start it. They said that it is very expensive so if you do not have insurance or maybe an insurance that will not cover it they wouldn't push it. They said research shows that Pulmozyme seems to really have an effect on a CFer who has moderate to high respitory symptoms. I can tell you that both of my kids have mild respitory issues and it seems to really help think out the mucus. My youngest always seemed to have thick mucus and it was hard to clear, he started Pulmozyme about 3 weeks ago and I can already see the difference in the thickness of the mucus. I would say to give it a try, I know if the doctors prescribe it, the Pulmozyme makers will actually send you a sample to try. I can see a difference so that is why we have chose to start it and continue with it. Hope this helps.
 
S

serendipity730

New member
<P>Hi,</P>
<P> </P>
<P>I'm an adult with CF, and I have been on Pulmozyme since it came out in the mid- 1990's. While it is hard to say how it has affected me, I think the concept behind Pulmozyme is excellent, and in the scheme of things, it doesn't take that long to nebulize (10 mins max). Hypertonic saline is good also (I have been doing hypertonic for about 6 yrs), but it can be irritating to the airways. </P>
<P> </P>
<P>It's great to see the little ones with CF benefitting from all of the advances that came about when I was a teenager. </P>
<P> </P>
<P>Best of luck to you!</P>
 
S

serendipity730

New member
<P>Hi,</P>
<P></P>
<P>I'm an adult with CF, and I have been on Pulmozyme since it came out in the mid- 1990's. While it is hard to say how it has affected me, I think the concept behind Pulmozyme is excellent, and in the scheme of things, it doesn't take that long to nebulize (10 mins max). Hypertonic saline is good also (I have been doing hypertonic for about 6 yrs), but it can be irritating to the airways. </P>
<P></P>
<P>It's great to see the little ones with CF benefitting from all of the advances that came about when I was a teenager. </P>
<P></P>
<P>Best of luck to you!</P>
 
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