denufosol vs. hypertonic saline

B

badcheesemomma

New member
I'm wondering if anyone has seen improvement with denufosol? My daughter started the trial in 09, and in a year and a half has had over a 20% drop in her pft's. My center has in no way attempted or addressed this issue with us (hence we are switching). I wanted to have her start the saline, but she can't while in the study. I am to the point where I want to pull her from it just to get her back up. Am I wrong? Hopefully the new place will address this, I am just sick of not getting answers or treatments. I hate to have to leave a study as I believe its vital information for the results. Arg!
 
B

badcheesemomma

New member
I'm wondering if anyone has seen improvement with denufosol? My daughter started the trial in 09, and in a year and a half has had over a 20% drop in her pft's. My center has in no way attempted or addressed this issue with us (hence we are switching). I wanted to have her start the saline, but she can't while in the study. I am to the point where I want to pull her from it just to get her back up. Am I wrong? Hopefully the new place will address this, I am just sick of not getting answers or treatments. I hate to have to leave a study as I believe its vital information for the results. Arg!
 
B

badcheesemomma

New member
I'm wondering if anyone has seen improvement with denufosol? My daughter started the trial in 09, and in a year and a half has had over a 20% drop in her pft's. My center has in no way attempted or addressed this issue with us (hence we are switching). I wanted to have her start the saline, but she can't while in the study. I am to the point where I want to pull her from it just to get her back up. Am I wrong? Hopefully the new place will address this, I am just sick of not getting answers or treatments. I hate to have to leave a study as I believe its vital information for the results. Arg!
 
A

AleksandraKaczynska

New member
Hi,
I was recently on a fundation meeting for cf families here (i'm from Poland).
I'm very intereset in denufosol, bronchitol and so on since my daughter has a mild cf and is only 3 - and these medicaments give us hope.
I heard one of our doctors say that after some time of using these small airways clearing medicaments the PFT's may drop acctually because the small airways are being unblocked and that after a time evrything comes back to normal nad better....
But we are most of all parents to our kids and if no specialist can tell you what's going on... I would drop out....
I can give you contatc to this doctor - but I believe you can find someone nearer to where you live.

I chequed and have no contact with someone here who would be in trial with denufosol.
try asking the question on <a target=_blank class=ftalternatingbarlinklarge href="http://ecorn-cf.eu/
">http://ecorn-cf.eu/
</a>
 
A

AleksandraKaczynska

New member
Hi,
I was recently on a fundation meeting for cf families here (i'm from Poland).
I'm very intereset in denufosol, bronchitol and so on since my daughter has a mild cf and is only 3 - and these medicaments give us hope.
I heard one of our doctors say that after some time of using these small airways clearing medicaments the PFT's may drop acctually because the small airways are being unblocked and that after a time evrything comes back to normal nad better....
But we are most of all parents to our kids and if no specialist can tell you what's going on... I would drop out....
I can give you contatc to this doctor - but I believe you can find someone nearer to where you live.

I chequed and have no contact with someone here who would be in trial with denufosol.
try asking the question on <a target=_blank class=ftalternatingbarlinklarge href="http://ecorn-cf.eu/
">http://ecorn-cf.eu/
</a>
 
A

AleksandraKaczynska

New member
Hi,
<br />I was recently on a fundation meeting for cf families here (i'm from Poland).
<br />I'm very intereset in denufosol, bronchitol and so on since my daughter has a mild cf and is only 3 - and these medicaments give us hope.
<br />I heard one of our doctors say that after some time of using these small airways clearing medicaments the PFT's may drop acctually because the small airways are being unblocked and that after a time evrything comes back to normal nad better....
<br />But we are most of all parents to our kids and if no specialist can tell you what's going on... I would drop out....
<br />I can give you contatc to this doctor - but I believe you can find someone nearer to where you live.
<br />
<br />I chequed and have no contact with someone here who would be in trial with denufosol.
<br />try asking the question on <a target=_blank class=ftalternatingbarlinklarge href="http://ecorn-cf.eu/
">http://ecorn-cf.eu/
</a><br />
<br />
<br />
<br />
 
S

swatterson

New member
it's your right to pull you child from a clinical trial at anytime for any reason, but follow Dr. orders regarding stopping immediately or gradually as I don't know what denufosol is or the side affects.

At the last hospital stay my child (14 y girl) tried the saline and like the results.
 
S

swatterson

New member
it's your right to pull you child from a clinical trial at anytime for any reason, but follow Dr. orders regarding stopping immediately or gradually as I don't know what denufosol is or the side affects.

At the last hospital stay my child (14 y girl) tried the saline and like the results.
 
S

swatterson

New member
it's your right to pull you child from a clinical trial at anytime for any reason, but follow Dr. orders regarding stopping immediately or gradually as I don't know what denufosol is or the side affects.
<br />
<br />At the last hospital stay my child (14 y girl) tried the saline and like the results.
 
S

swatterson

New member
it's your right to pull you child from a clinical trial at anytime for any reason, but follow Dr. orders regarding stopping immediately or gradually as I don't know what denufosol is or the side affects.

At the last hospital stay my child (14 y girl) tried the saline and like the results.
 
S

swatterson

New member
it's your right to pull you child from a clinical trial at anytime for any reason, but follow Dr. orders regarding stopping immediately or gradually as I don't know what denufosol is or the side affects.

At the last hospital stay my child (14 y girl) tried the saline and like the results.
 
S

swatterson

New member
it's your right to pull you child from a clinical trial at anytime for any reason, but follow Dr. orders regarding stopping immediately or gradually as I don't know what denufosol is or the side affects.
<br />
<br />At the last hospital stay my child (14 y girl) tried the saline and like the results.
 
C

cathycat

Guest
My son was on the denufosol blind study for a year (we didnt know if he was actually getting denufosol or not). During that time, we also saw some fluctuations in pfts. After the first year, he continued in the study and was given denufosol. In the first few months, his pfts continued to drop. We also felt bad about dropping out of the study....but the doctors agreed that it wasn't worth the risk and pulled him out. The team spoke to him and let him know that anytime spent in a study provides valuable data for research.
 
C

cathycat

Guest
My son was on the denufosol blind study for a year (we didnt know if he was actually getting denufosol or not). During that time, we also saw some fluctuations in pfts. After the first year, he continued in the study and was given denufosol. In the first few months, his pfts continued to drop. We also felt bad about dropping out of the study....but the doctors agreed that it wasn't worth the risk and pulled him out. The team spoke to him and let him know that anytime spent in a study provides valuable data for research.
 
C

cathycat

Guest
My son was on the denufosol blind study for a year (we didnt know if he was actually getting denufosol or not). During that time, we also saw some fluctuations in pfts. After the first year, he continued in the study and was given denufosol. In the first few months, his pfts continued to drop. We also felt bad about dropping out of the study....but the doctors agreed that it wasn't worth the risk and pulled him out. The team spoke to him and let him know that anytime spent in a study provides valuable data for research.
<br />
 
B

Brinlysmom

Guest
Hi- It has been awhile since i have visited this site of course because my lil cf'r has been doing great! Well... we have also been on the placebo TigerII (denufosol study) and we are now on the actual drug. Brinly's pft have dropped too and she has the psuedomomas(sp) bug in her lungs and we are headed to the hospital for 10 days on Monday! I haven't really noticed any signifigant or better results since we have been on the drug. We were on the hypertonic and that seemed like it cleaned out her lungs better. As i sit reading the other replies i think we will take her out of the study too. I haven't read anything good that would make me think twice! We will go back to a more natural product that makes sense with her basic salt defect.

I love this site- it always makes me feel better when i am in question regarding my cfer's health!!
Blythe
 
B

Brinlysmom

Guest
Hi- It has been awhile since i have visited this site of course because my lil cf'r has been doing great! Well... we have also been on the placebo TigerII (denufosol study) and we are now on the actual drug. Brinly's pft have dropped too and she has the psuedomomas(sp) bug in her lungs and we are headed to the hospital for 10 days on Monday! I haven't really noticed any signifigant or better results since we have been on the drug. We were on the hypertonic and that seemed like it cleaned out her lungs better. As i sit reading the other replies i think we will take her out of the study too. I haven't read anything good that would make me think twice! We will go back to a more natural product that makes sense with her basic salt defect.

I love this site- it always makes me feel better when i am in question regarding my cfer's health!!
Blythe
 
B

Brinlysmom

Guest
Hi- It has been awhile since i have visited this site of course because my lil cf'r has been doing great! Well... we have also been on the placebo TigerII (denufosol study) and we are now on the actual drug. Brinly's pft have dropped too and she has the psuedomomas(sp) bug in her lungs and we are headed to the hospital for 10 days on Monday! I haven't really noticed any signifigant or better results since we have been on the drug. We were on the hypertonic and that seemed like it cleaned out her lungs better. As i sit reading the other replies i think we will take her out of the study too. I haven't read anything good that would make me think twice! We will go back to a more natural product that makes sense with her basic salt defect.
<br />
<br />I love this site- it always makes me feel better when i am in question regarding my cfer's health!!
<br />Blythe
 
B

badcheesemomma

New member
We are on a break from denufosol for a whikle and have started hypersal. You can take an interruption once your once your on the actual drug without pulling out of the study, so that's what we are doing for now. We also will be going in for a 2 week stay.
 
B

badcheesemomma

New member
We are on a break from denufosol for a whikle and have started hypersal. You can take an interruption once your once your on the actual drug without pulling out of the study, so that's what we are doing for now. We also will be going in for a 2 week stay.
 
You must log in or register to reply here.
Top