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GSH??

JRPandTJP

New member
I'm not sure either. GSH does come in oral and inhaled forms (though not an aerosol, you have to neb it). The inhaled type is buffered and produces a mild hypertonic solution. We use inhaled for our son and it makes all the difference in the world. We are way below the protocol levels and it works to keep his lungs clear. When he misses it a couple days we can tell a huge difference. Since using it he has grown/gained better, hardly gets a cold and goes through them easily if he does, and has had 3 non-PA cultures in a row (cultured and treated once with TOBI at 15 months). We are pleased. Oral and inhaled were being studied and listed on the CFF trial page, but it is no longer there. Not sure if they are still in progress or if funding became an issue.

I'd like to know what this article refers to as well, since we are always keeping our eyes and ears open.
 

dasjsmum

New member
Hi Jody

Sorry to get off topic a little, but how often do you neb GSH? Once a day? And do you give him 200mg neb with saline or boiled water? Just for interest sake, do you give him oral and nebbed? I dont give Sam the full protocol either, but have just been giving him oral lately. If the nebbed makes that much difference I think I will start him on them.
PS I think it's probably the Denfusal also...check out this site (if you havent already!)

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/ClinicalTrials/ProteinRescueIonTransportTherapies/
">http://www.cff.org/research/Cl...onTransportTherapies/
</a>
 

dasjsmum

New member
Hi Jody

Sorry to get off topic a little, but how often do you neb GSH? Once a day? And do you give him 200mg neb with saline or boiled water? Just for interest sake, do you give him oral and nebbed? I dont give Sam the full protocol either, but have just been giving him oral lately. If the nebbed makes that much difference I think I will start him on them.
PS I think it's probably the Denfusal also...check out this site (if you havent already!)

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/ClinicalTrials/ProteinRescueIonTransportTherapies/
">http://www.cff.org/research/Cl...onTransportTherapies/
</a>
 

dasjsmum

New member
Hi Jody

Sorry to get off topic a little, but how often do you neb GSH? Once a day? And do you give him 200mg neb with saline or boiled water? Just for interest sake, do you give him oral and nebbed? I dont give Sam the full protocol either, but have just been giving him oral lately. If the nebbed makes that much difference I think I will start him on them.
PS I think it's probably the Denfusal also...check out this site (if you havent already!)

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/research/ClinicalResearch/ClinicalTrials/ProteinRescueIonTransportTherapies/
">http://www.cff.org/research/Cl...onTransportTherapies/
</a>
 
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