Pulmozyme and Saline

[meteoras69]

Hello,

My son, Aidan, was diagnosed with CF at three weeks of age and is now 16 months old. He was hospitalized at 7 months due to bronchitis, had IV antibiotics for two weeks, and quickly got well. He sometimes has a dry cough, but other than this, no lung symptoms. We do CPT twice a day, every day. I know that even though Aidan seems to have no active pulmonary symptoms at this time, he can still have changes taking place in his lungs. I'm wondering at what age most children with CF begin Pulmozyme and/or Hypertonic Saline. It's my understanding that these medications help to break-up the mucus in the lungs and restore normal airway surface.....and that they are good preventive medications. Do your children take these? Do docs usually wait for more lung involvement to start these...
Thanks for the advice,
--Ginger

 

[meteoras69]

Hello,

My son, Aidan, was diagnosed with CF at three weeks of age and is now 16 months old. He was hospitalized at 7 months due to bronchitis, had IV antibiotics for two weeks, and quickly got well. He sometimes has a dry cough, but other than this, no lung symptoms. We do CPT twice a day, every day. I know that even though Aidan seems to have no active pulmonary symptoms at this time, he can still have changes taking place in his lungs. I'm wondering at what age most children with CF begin Pulmozyme and/or Hypertonic Saline. It's my understanding that these medications help to break-up the mucus in the lungs and restore normal airway surface.....and that they are good preventive medications. Do your children take these? Do docs usually wait for more lung involvement to start these...
Thanks for the advice,
--Ginger

 

[meteoras69]

Hello,
<br />
<br />My son, Aidan, was diagnosed with CF at three weeks of age and is now 16 months old. He was hospitalized at 7 months due to bronchitis, had IV antibiotics for two weeks, and quickly got well. He sometimes has a dry cough, but other than this, no lung symptoms. We do CPT twice a day, every day. I know that even though Aidan seems to have no active pulmonary symptoms at this time, he can still have changes taking place in his lungs. I'm wondering at what age most children with CF begin Pulmozyme and/or Hypertonic Saline. It's my understanding that these medications help to break-up the mucus in the lungs and restore normal airway surface.....and that they are good preventive medications. Do your children take these? Do docs usually wait for more lung involvement to start these...
<br />Thanks for the advice,
<br />--Ginger

 

[crickit715]

my daughter started pulmozyme at 3 weeks of age (immediatly after diagnosis), she is currently enrolled in the hts clinical trial and will most likely be officially starting hypertonic saline in december when the trial is over. she also did not show any pulmonary signs when they started her on pulmozyme, but our cf doc and myself have chosen to be proactive instead of reactive when it comes to her cf. (sounds like this is what you are trying to do!! good luck! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[crickit715]

my daughter started pulmozyme at 3 weeks of age (immediatly after diagnosis), she is currently enrolled in the hts clinical trial and will most likely be officially starting hypertonic saline in december when the trial is over. she also did not show any pulmonary signs when they started her on pulmozyme, but our cf doc and myself have chosen to be proactive instead of reactive when it comes to her cf. (sounds like this is what you are trying to do!! good luck! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[crickit715]

my daughter started pulmozyme at 3 weeks of age (immediatly after diagnosis), she is currently enrolled in the hts clinical trial and will most likely be officially starting hypertonic saline in december when the trial is over. she also did not show any pulmonary signs when they started her on pulmozyme, but our cf doc and myself have chosen to be proactive instead of reactive when it comes to her cf. (sounds like this is what you are trying to do!! good luck! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Mommafirst]

We requested to start pulmozyme at age 2, even though our clinic usually adds it at age 4 unless there are acute signs of lung disease. We used it for 9 months and saw no difference, so we pulled her off it for a year. In that year she was hospitalized three times. She's been back on for over a year and has had the best year of health in her life. I <3 pulmozyme!!!

As for HTS we are debating it right now. Our doctor feels that it is very irritating to the lungs for a child that doesn't have a lot of congestion. If there is a lot of mucus it is a great way to get it up and out. We will probably wait a little longer on the HTS.

 

[Mommafirst]

We requested to start pulmozyme at age 2, even though our clinic usually adds it at age 4 unless there are acute signs of lung disease. We used it for 9 months and saw no difference, so we pulled her off it for a year. In that year she was hospitalized three times. She's been back on for over a year and has had the best year of health in her life. I <3 pulmozyme!!!

As for HTS we are debating it right now. Our doctor feels that it is very irritating to the lungs for a child that doesn't have a lot of congestion. If there is a lot of mucus it is a great way to get it up and out. We will probably wait a little longer on the HTS.

 

[Mommafirst]

We requested to start pulmozyme at age 2, even though our clinic usually adds it at age 4 unless there are acute signs of lung disease. We used it for 9 months and saw no difference, so we pulled her off it for a year. In that year she was hospitalized three times. She's been back on for over a year and has had the best year of health in her life. I <3 pulmozyme!!!
<br />
<br />As for HTS we are debating it right now. Our doctor feels that it is very irritating to the lungs for a child that doesn't have a lot of congestion. If there is a lot of mucus it is a great way to get it up and out. We will probably wait a little longer on the HTS.

 

[Ratatosk]

DS started pulmozyme when he was 2 1/2. We asked about HTS, but his doctor felt at the time there hadn't been enough studies done on his age group. Mainly they were done on older individuals with more lung issues. Also, when DS has had lung scans, his lungs have been pretty clear of mucus, so he was also hesistant to use it due to concerns with irritation.

 

[Ratatosk]

DS started pulmozyme when he was 2 1/2. We asked about HTS, but his doctor felt at the time there hadn't been enough studies done on his age group. Mainly they were done on older individuals with more lung issues. Also, when DS has had lung scans, his lungs have been pretty clear of mucus, so he was also hesistant to use it due to concerns with irritation.

 

[Ratatosk]

DS started pulmozyme when he was 2 1/2. We asked about HTS, but his doctor felt at the time there hadn't been enough studies done on his age group. Mainly they were done on older individuals with more lung issues. Also, when DS has had lung scans, his lungs have been pretty clear of mucus, so he was also hesistant to use it due to concerns with irritation.

 

[zoe4life]

Hi. Zoe started Pulmozyme around 1 1/2 to 2. She started Hypertonic 7% last year at 5yrs old. It can be very irritating ...our clinic does their first treatment in clinic so they can see how they react. Zoe does very well with it. She uses a mask so the saline goes through the nasal passages. It seems to really help with nose issues. She does Pulmozyme once a day and Hypertonic twice. Good luck !

 

[zoe4life]

Hi. Zoe started Pulmozyme around 1 1/2 to 2. She started Hypertonic 7% last year at 5yrs old. It can be very irritating ...our clinic does their first treatment in clinic so they can see how they react. Zoe does very well with it. She uses a mask so the saline goes through the nasal passages. It seems to really help with nose issues. She does Pulmozyme once a day and Hypertonic twice. Good luck !

 

[zoe4life]

Hi. Zoe started Pulmozyme around 1 1/2 to 2. She started Hypertonic 7% last year at 5yrs old. It can be very irritating ...our clinic does their first treatment in clinic so they can see how they react. Zoe does very well with it. She uses a mask so the saline goes through the nasal passages. It seems to really help with nose issues. She does Pulmozyme once a day and Hypertonic twice. Good luck !

 

[edan]

Hi. For all of you that do pulm and/or hts, do you do a bronchodialator as well?

 

[edan]

Hi. For all of you that do pulm and/or hts, do you do a bronchodialator as well?

 

[edan]

Hi. For all of you that do pulm and/or hts, do you do a bronchodialator as well?

 

[Ratatosk]

DS doees albuterol/atrovent nebs with each vest/cpt treatment. Has done this since he was a few days old.

 

[Ratatosk]

DS doees albuterol/atrovent nebs with each vest/cpt treatment. Has done this since he was a few days old.