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Hypertonic Saline/Mucomyst/Pulmozyme....

R

ReneeP

New member
My girls have always been on Mucomyst (started in MPLS clinic and I just refused to ever take them off of it after we moved). They are both very healthy lungwise. For that reason I just figured what we were doing was working so why change it. Well, I've had a couple of drs really push HS on us. I finally agreed but instead of taking them off Mucomyst (which is what the new dr wants us to do), we alternate it. We do one in the morning (albuterol puffer first then HS) and then at night we do albuterol mixed with Mucumsyt followed by Pulmozyme. The girls HATE the HS. They say it tastes horrible. I know most people feel that way about Mucomyst but they've been on it for so many years, it doesn't phase them at all. My 8 year old never coughs, HS or not. But I have noticed my 12 year old has developed what I would call a chronic cough since being on the HS. It is not only when she is using it...it's off and on all day... sometimes keeps her up at night. She NEVER had a constant cough before... just very occasional throat clearing. I can't figure out if it is really the HS or if it's just CF taking it's course because she's getting older. Also, if it is the HS, is it a good thing that she's coughing more, or a bad sign? She doesn't cough anything up... though she could be swallowing it and I don't know there's anything there. She has never coughed up anything...but I never before thought there was anything there to cough up. I'm just confused I guess. Everyone raves about HS but I just don't feel good about it. I mean, if what we were doing was working, should we really change just because it's the new thing to do? Is it just peer pressure? Or will it really help her in the long run?

Sorry for rambling... Sometimes being a parent is soooo hard. I want to make all the right decisions, but I don't always know what they are.

Thanks for any advice.
 
R

ReneeP

New member
My girls have always been on Mucomyst (started in MPLS clinic and I just refused to ever take them off of it after we moved). They are both very healthy lungwise. For that reason I just figured what we were doing was working so why change it. Well, I've had a couple of drs really push HS on us. I finally agreed but instead of taking them off Mucomyst (which is what the new dr wants us to do), we alternate it. We do one in the morning (albuterol puffer first then HS) and then at night we do albuterol mixed with Mucumsyt followed by Pulmozyme. The girls HATE the HS. They say it tastes horrible. I know most people feel that way about Mucomyst but they've been on it for so many years, it doesn't phase them at all. My 8 year old never coughs, HS or not. But I have noticed my 12 year old has developed what I would call a chronic cough since being on the HS. It is not only when she is using it...it's off and on all day... sometimes keeps her up at night. She NEVER had a constant cough before... just very occasional throat clearing. I can't figure out if it is really the HS or if it's just CF taking it's course because she's getting older. Also, if it is the HS, is it a good thing that she's coughing more, or a bad sign? She doesn't cough anything up... though she could be swallowing it and I don't know there's anything there. She has never coughed up anything...but I never before thought there was anything there to cough up. I'm just confused I guess. Everyone raves about HS but I just don't feel good about it. I mean, if what we were doing was working, should we really change just because it's the new thing to do? Is it just peer pressure? Or will it really help her in the long run?

Sorry for rambling... Sometimes being a parent is soooo hard. I want to make all the right decisions, but I don't always know what they are.

Thanks for any advice.
 
R

ReneeP

New member
My girls have always been on Mucomyst (started in MPLS clinic and I just refused to ever take them off of it after we moved). They are both very healthy lungwise. For that reason I just figured what we were doing was working so why change it. Well, I've had a couple of drs really push HS on us. I finally agreed but instead of taking them off Mucomyst (which is what the new dr wants us to do), we alternate it. We do one in the morning (albuterol puffer first then HS) and then at night we do albuterol mixed with Mucumsyt followed by Pulmozyme. The girls HATE the HS. They say it tastes horrible. I know most people feel that way about Mucomyst but they've been on it for so many years, it doesn't phase them at all. My 8 year old never coughs, HS or not. But I have noticed my 12 year old has developed what I would call a chronic cough since being on the HS. It is not only when she is using it...it's off and on all day... sometimes keeps her up at night. She NEVER had a constant cough before... just very occasional throat clearing. I can't figure out if it is really the HS or if it's just CF taking it's course because she's getting older. Also, if it is the HS, is it a good thing that she's coughing more, or a bad sign? She doesn't cough anything up... though she could be swallowing it and I don't know there's anything there. She has never coughed up anything...but I never before thought there was anything there to cough up. I'm just confused I guess. Everyone raves about HS but I just don't feel good about it. I mean, if what we were doing was working, should we really change just because it's the new thing to do? Is it just peer pressure? Or will it really help her in the long run?

Sorry for rambling... Sometimes being a parent is soooo hard. I want to make all the right decisions, but I don't always know what they are.

Thanks for any advice.
 
K

ktsmom

New member
Renee, I just came from a "raving about HS" session today - my doc has put our almost 4 year old on it. We'll start it in the next few days, along with albuterol. She is currently also on Pulmozyme and TOBI 28 on/off.

I've done lots of research on HS. I've heard about the coughing, the tightening of the airways, etc. I, too, have tons of questions and want to make the right decisions. But I sincerely believe the push for HS is well-founded and the reasoning behind how and why it works just makes sense to me (but mind you, I'm not a doc, nor a micro-biologist, etc). I'm just a mom, and I posted about my own anxiety regarding all of this in the Families section just today.

Ask your doc. The answer could be any of the things you mentioned but I definitely would let him/her know what is going on. Good luck!
 
K

ktsmom

New member
Renee, I just came from a "raving about HS" session today - my doc has put our almost 4 year old on it. We'll start it in the next few days, along with albuterol. She is currently also on Pulmozyme and TOBI 28 on/off.

I've done lots of research on HS. I've heard about the coughing, the tightening of the airways, etc. I, too, have tons of questions and want to make the right decisions. But I sincerely believe the push for HS is well-founded and the reasoning behind how and why it works just makes sense to me (but mind you, I'm not a doc, nor a micro-biologist, etc). I'm just a mom, and I posted about my own anxiety regarding all of this in the Families section just today.

Ask your doc. The answer could be any of the things you mentioned but I definitely would let him/her know what is going on. Good luck!
 
K

ktsmom

New member
Renee, I just came from a "raving about HS" session today - my doc has put our almost 4 year old on it. We'll start it in the next few days, along with albuterol. She is currently also on Pulmozyme and TOBI 28 on/off.

I've done lots of research on HS. I've heard about the coughing, the tightening of the airways, etc. I, too, have tons of questions and want to make the right decisions. But I sincerely believe the push for HS is well-founded and the reasoning behind how and why it works just makes sense to me (but mind you, I'm not a doc, nor a micro-biologist, etc). I'm just a mom, and I posted about my own anxiety regarding all of this in the Families section just today.

Ask your doc. The answer could be any of the things you mentioned but I definitely would let him/her know what is going on. Good luck!
 
N

NoExcuses

New member
1. Renee, let me tell you that you will probably get more people to read your post and subsequently respond to it if you dont' type in huge blocks of text. People see the huge block of text and it looks hard to read. If you space things out with paragraphs, you'll get more responses.

2. If you're wondering what meds to have your kids on, you can check out my Warwick category on my blog. There I have the letter he wrote to me and it discusses different meds.
 
N

NoExcuses

New member
1. Renee, let me tell you that you will probably get more people to read your post and subsequently respond to it if you dont' type in huge blocks of text. People see the huge block of text and it looks hard to read. If you space things out with paragraphs, you'll get more responses.

2. If you're wondering what meds to have your kids on, you can check out my Warwick category on my blog. There I have the letter he wrote to me and it discusses different meds.
 
N

NoExcuses

New member
1. Renee, let me tell you that you will probably get more people to read your post and subsequently respond to it if you dont' type in huge blocks of text. People see the huge block of text and it looks hard to read. If you space things out with paragraphs, you'll get more responses.

2. If you're wondering what meds to have your kids on, you can check out my Warwick category on my blog. There I have the letter he wrote to me and it discusses different meds.
 
M

MCGrad2006

Guest
I found that when I was on HS a few weeks ago, that yes, I coughed more throughout the whole day. I am currently off of it because I had an infection and my doc put me on Tobi instead. Even if she is not coughing stuff up and out, then she is probably getting stuff up and just swallowing it. Which may be uncomfortable, but at least its not in her lungs clogging them. As far as what KTSMOM says, I agree, I think HTS is the way to go to. Its great because its cheap, effective and its not an antibiotic. Knowing those things its good because it doesnt build up resistance to the diff abx, but it gets stuff out and clears the mucus. But also like KTSMOM says, I am not a doctor either, it just makes sense to me.

Hope this helps!
 
M

MCGrad2006

Guest
I found that when I was on HS a few weeks ago, that yes, I coughed more throughout the whole day. I am currently off of it because I had an infection and my doc put me on Tobi instead. Even if she is not coughing stuff up and out, then she is probably getting stuff up and just swallowing it. Which may be uncomfortable, but at least its not in her lungs clogging them. As far as what KTSMOM says, I agree, I think HTS is the way to go to. Its great because its cheap, effective and its not an antibiotic. Knowing those things its good because it doesnt build up resistance to the diff abx, but it gets stuff out and clears the mucus. But also like KTSMOM says, I am not a doctor either, it just makes sense to me.

Hope this helps!
 
M

MCGrad2006

Guest
I found that when I was on HS a few weeks ago, that yes, I coughed more throughout the whole day. I am currently off of it because I had an infection and my doc put me on Tobi instead. Even if she is not coughing stuff up and out, then she is probably getting stuff up and just swallowing it. Which may be uncomfortable, but at least its not in her lungs clogging them. As far as what KTSMOM says, I agree, I think HTS is the way to go to. Its great because its cheap, effective and its not an antibiotic. Knowing those things its good because it doesnt build up resistance to the diff abx, but it gets stuff out and clears the mucus. But also like KTSMOM says, I am not a doctor either, it just makes sense to me.

Hope this helps!
 
J

JazzysMom

New member
What I can tell you is my experience with HS......I used it for a few months back in 2005. I had to stop using it . Although it made me cough greatly which in turn made things move around even if I didnt actually get it up....after a few weeks of use, my airways starting reacting. It got quite severe. Now what the doctor & I dont know is HOW much of that was HS & how much was other things, but I havent had that bad of a time since stopping it. I think like just about anything else.....if it works for someone it works great. If it doesnt work for someone that it doesnt work great. I would be careful that the chronic cough isnt reactive airways!!!!!
 
J

JazzysMom

New member
What I can tell you is my experience with HS......I used it for a few months back in 2005. I had to stop using it . Although it made me cough greatly which in turn made things move around even if I didnt actually get it up....after a few weeks of use, my airways starting reacting. It got quite severe. Now what the doctor & I dont know is HOW much of that was HS & how much was other things, but I havent had that bad of a time since stopping it. I think like just about anything else.....if it works for someone it works great. If it doesnt work for someone that it doesnt work great. I would be careful that the chronic cough isnt reactive airways!!!!!
 
J

JazzysMom

New member
What I can tell you is my experience with HS......I used it for a few months back in 2005. I had to stop using it . Although it made me cough greatly which in turn made things move around even if I didnt actually get it up....after a few weeks of use, my airways starting reacting. It got quite severe. Now what the doctor & I dont know is HOW much of that was HS & how much was other things, but I havent had that bad of a time since stopping it. I think like just about anything else.....if it works for someone it works great. If it doesnt work for someone that it doesnt work great. I would be careful that the chronic cough isnt reactive airways!!!!!
 
A

AnD

New member
I started the HS about a month ago, and had the same concerns! The first couple of weeks, I was coughing like crazy while doing it, and still coughing during the day, all day, much more than before, and I was wondering if it was making things better or worse.
But now, the all day cough has subsided, and I feel like I am breathing better and am actually looking forward a bit to my appointment next month to see if my numbers have gone up <img src=""> . I also had a bit of throat irritation until I got used to it, which probably contributed to the coughing. I would check with the doctor just in case it is the HS causing a problem with irritation, etc. but in my experience, it just took a while to adjust and get all that garbage up, and I'm glad I stuck with it.
 
A

AnD

New member
I started the HS about a month ago, and had the same concerns! The first couple of weeks, I was coughing like crazy while doing it, and still coughing during the day, all day, much more than before, and I was wondering if it was making things better or worse.
But now, the all day cough has subsided, and I feel like I am breathing better and am actually looking forward a bit to my appointment next month to see if my numbers have gone up <img src=""> . I also had a bit of throat irritation until I got used to it, which probably contributed to the coughing. I would check with the doctor just in case it is the HS causing a problem with irritation, etc. but in my experience, it just took a while to adjust and get all that garbage up, and I'm glad I stuck with it.
 
A

AnD

New member
I started the HS about a month ago, and had the same concerns! The first couple of weeks, I was coughing like crazy while doing it, and still coughing during the day, all day, much more than before, and I was wondering if it was making things better or worse.
But now, the all day cough has subsided, and I feel like I am breathing better and am actually looking forward a bit to my appointment next month to see if my numbers have gone up <img src=""> . I also had a bit of throat irritation until I got used to it, which probably contributed to the coughing. I would check with the doctor just in case it is the HS causing a problem with irritation, etc. but in my experience, it just took a while to adjust and get all that garbage up, and I'm glad I stuck with it.
 
M

MCGrad2006

Guest
Yea I was really disappointed when I had to stop doing it. It was bothering my throat A LOT and I think that contributed to the cough, but b/c of my cold, I needed the extra abx boost. I am hoping I can start it up again when I feel better. I want my body to adjust to it.
 
M

MCGrad2006

Guest
Yea I was really disappointed when I had to stop doing it. It was bothering my throat A LOT and I think that contributed to the cough, but b/c of my cold, I needed the extra abx boost. I am hoping I can start it up again when I feel better. I want my body to adjust to it.
 
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