Hi, our little one seems to have alot of mucus congestion, and it seems to be getting worse each week. He is now finding it difficult to finish his bottles without me almost force feeding and I am worried he is will start to lose weight. He is doing so well on so many fronts (he is on the 90th percentile for weight and height) so I really want to work this out. Both the doctors at the CF clinic and our primary care doctor have no solutions. We have tried saline to clear it out - doesn't work, just makes him throw up, we have tried water before each bottle and now they just say maybe he will grow out of it. I am getting worried as he is sounding more "chesty" and "rattly" but they say nothing is on his chest when they listen. You guys on this forum seem to have so many tips and answers that the doctors don't even think about, so any advice is greatly appreciated! Also, I have read maybe Pulmozyne is good for this sort of thing - any thoughts on this? Have also enquired about HTS, but they will not allow him on the trial as our centre is not participating in the study. thanks so much in advance for your ideas... x
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Mucus and a 5 month old
- Thread starter bet10
- Start date
Hi, our little one seems to have alot of mucus congestion, and it seems to be getting worse each week. He is now finding it difficult to finish his bottles without me almost force feeding and I am worried he is will start to lose weight. He is doing so well on so many fronts (he is on the 90th percentile for weight and height) so I really want to work this out. Both the doctors at the CF clinic and our primary care doctor have no solutions. We have tried saline to clear it out - doesn't work, just makes him throw up, we have tried water before each bottle and now they just say maybe he will grow out of it. I am getting worried as he is sounding more "chesty" and "rattly" but they say nothing is on his chest when they listen. You guys on this forum seem to have so many tips and answers that the doctors don't even think about, so any advice is greatly appreciated! Also, I have read maybe Pulmozyne is good for this sort of thing - any thoughts on this? Have also enquired about HTS, but they will not allow him on the trial as our centre is not participating in the study. thanks so much in advance for your ideas... x
Hi, our little one seems to have alot of mucus congestion, and it seems to be getting worse each week. He is now finding it difficult to finish his bottles without me almost force feeding and I am worried he is will start to lose weight. He is doing so well on so many fronts (he is on the 90th percentile for weight and height) so I really want to work this out. Both the doctors at the CF clinic and our primary care doctor have no solutions. We have tried saline to clear it out - doesn't work, just makes him throw up, we have tried water before each bottle and now they just say maybe he will grow out of it. I am getting worried as he is sounding more "chesty" and "rattly" but they say nothing is on his chest when they listen. You guys on this forum seem to have so many tips and answers that the doctors don't even think about, so any advice is greatly appreciated! Also, I have read maybe Pulmozyne is good for this sort of thing - any thoughts on this? Have also enquired about HTS, but they will not allow him on the trial as our centre is not participating in the study. thanks so much in advance for your ideas... x
Hi, our little one seems to have alot of mucus congestion, and it seems to be getting worse each week. He is now finding it difficult to finish his bottles without me almost force feeding and I am worried he is will start to lose weight. He is doing so well on so many fronts (he is on the 90th percentile for weight and height) so I really want to work this out. Both the doctors at the CF clinic and our primary care doctor have no solutions. We have tried saline to clear it out - doesn't work, just makes him throw up, we have tried water before each bottle and now they just say maybe he will grow out of it. I am getting worried as he is sounding more "chesty" and "rattly" but they say nothing is on his chest when they listen. You guys on this forum seem to have so many tips and answers that the doctors don't even think about, so any advice is greatly appreciated! Also, I have read maybe Pulmozyne is good for this sort of thing - any thoughts on this? Have also enquired about HTS, but they will not allow him on the trial as our centre is not participating in the study. thanks so much in advance for your ideas... x
Hi, our little one seems to have alot of mucus congestion, and it seems to be getting worse each week. He is now finding it difficult to finish his bottles without me almost force feeding and I am worried he is will start to lose weight. He is doing so well on so many fronts (he is on the 90th percentile for weight and height) so I really want to work this out. Both the doctors at the CF clinic and our primary care doctor have no solutions. We have tried saline to clear it out - doesn't work, just makes him throw up, we have tried water before each bottle and now they just say maybe he will grow out of it. I am getting worried as he is sounding more "chesty" and "rattly" but they say nothing is on his chest when they listen. You guys on this forum seem to have so many tips and answers that the doctors don't even think about, so any advice is greatly appreciated! Also, I have read maybe Pulmozyne is good for this sort of thing - any thoughts on this? Have also enquired about HTS, but they will not allow him on the trial as our centre is not participating in the study. thanks so much in advance for your ideas... x
Hi
My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
PM me if you have any ?'s or need to talk.
My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
PM me if you have any ?'s or need to talk.
Hi
My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
PM me if you have any ?'s or need to talk.
My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
PM me if you have any ?'s or need to talk.
Hi
My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
PM me if you have any ?'s or need to talk.
My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
PM me if you have any ?'s or need to talk.
Hi
My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
PM me if you have any ?'s or need to talk.
My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
PM me if you have any ?'s or need to talk.
Hi
<br />My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
<br />Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
<br />PM me if you have any ?'s or need to talk.
<br />My daughter is 5 mos old and she has had thick mucous in her lungs since they seen in a brochoscopy shortly after birth. She is on Pulmozyme 1 time per day (2 times when she came home from hospital), Saline 3% 2 times per day(we mix hyper sal 7% w/ .09% saline to make it), Albuterol 3 times per day, and now Tobi twice per day for culturing Psuedomonas.
<br />Has he had a culture? He should be on some sort of Nebulized meds. and alot of chest PT.
<br />PM me if you have any ?'s or need to talk.
M
Mommafirst
Guest
I really hate when your kid sounds rattly and the doctors insist the lungs are clear. My daughter was "clear" had a bronch and they found she was full of mucous. That was when we started pulmozyme and it seems to have helped a lot.
Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
M
Mommafirst
Guest
I really hate when your kid sounds rattly and the doctors insist the lungs are clear. My daughter was "clear" had a bronch and they found she was full of mucous. That was when we started pulmozyme and it seems to have helped a lot.
Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
M
Mommafirst
Guest
I really hate when your kid sounds rattly and the doctors insist the lungs are clear. My daughter was "clear" had a bronch and they found she was full of mucous. That was when we started pulmozyme and it seems to have helped a lot.
Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
M
Mommafirst
Guest
I really hate when your kid sounds rattly and the doctors insist the lungs are clear. My daughter was "clear" had a bronch and they found she was full of mucous. That was when we started pulmozyme and it seems to have helped a lot.
Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
M
Mommafirst
Guest
I really hate when your kid sounds rattly and the doctors insist the lungs are clear. My daughter was "clear" had a bronch and they found she was full of mucous. That was when we started pulmozyme and it seems to have helped a lot.
<br />
<br />Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
<br />
<br />I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
<br />
<br />Pulmozyme isn't approved for kids under 4 (I think its 4), but a lot of aggressive CF centers will put the kids on it younger. I definitely don't see a problem with asking them to try it. Its a very routine CF drug and if you dig into the history of some of the older CFers, you'll find that most did much better after the invention of pulmozyme.
<br />
<br />I was the one that asked our doctor about it. He said theat they don't routinely start kids until age 4, but that he thought it was a great idea to start her younger if we were on board with it.
Do you do chest physiotherapy (cpt) or bronchial drainage (bds) to get the stuff moved up and out? We had a similar experience with DS and were told he sounded fine, but found out from his cf doctor he had bronchitis. We were told to increase cpt to 4 times a day and to "beat that congestion" out of him.
He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
Do you do chest physiotherapy (cpt) or bronchial drainage (bds) to get the stuff moved up and out? We had a similar experience with DS and were told he sounded fine, but found out from his cf doctor he had bronchitis. We were told to increase cpt to 4 times a day and to "beat that congestion" out of him.
He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
Do you do chest physiotherapy (cpt) or bronchial drainage (bds) to get the stuff moved up and out? We had a similar experience with DS and were told he sounded fine, but found out from his cf doctor he had bronchitis. We were told to increase cpt to 4 times a day and to "beat that congestion" out of him.
He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
Do you do chest physiotherapy (cpt) or bronchial drainage (bds) to get the stuff moved up and out? We had a similar experience with DS and were told he sounded fine, but found out from his cf doctor he had bronchitis. We were told to increase cpt to 4 times a day and to "beat that congestion" out of him.
He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
Do you do chest physiotherapy (cpt) or bronchial drainage (bds) to get the stuff moved up and out? We had a similar experience with DS and were told he sounded fine, but found out from his cf doctor he had bronchitis. We were told to increase cpt to 4 times a day and to "beat that congestion" out of him.
<br />
<br />He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.
<br />
<br />He also had issues with sinus congestion and we tried the dreaded bulb syringe and saline drops. We dealt with it all winter long thinking it was a normal boogery nose issue until his doctor told us he had a sinus infection and prescribed abx to get rid of it once and for all.