I think this is a decision that is much harder on a parent of a child with CF than an adult with CF (like me).
Why do I think that? Well, it's not easy to sometimes go against doctor recommendation (as I did in 2003 to try oral GSH) and it's not always clear to see that choices we've made in regards to CF treatments have been the right ones. Ideally, we'd have foresight to see where this path leads vs another path.

When parents can't *feel* the difference as a patient like myself can (and not all patients can *feel* it), it is not always easy to trust in something that is currently under research.

I had my check-up on 3/8/2011 and started inhaling 200mg per day of GSH around mid Dec 2010. I can feel that it helped to clear out my airways in a way that HS and Pulmozyme had not been able to do alone in the 12 months prior to me inhaling GSH. Did my FEV1 show an improvement? NOPE. But, I feel like I have more energy (I am also on oral GSH) and I am finding it easier to breathe. So, I am definitely staying on it as part of my regular treatments with HS and Pulmozyme (and Vest) to keep the mucus moving outward.

My culture from 3/8 showed 2 strains of PA and no stenotrophomonas maltophilia. Was I displeased? EXTREMELY! But, not with GSH. If I am fighting bacterias (these clearly make my sputum thicker) that are harder on my body, I NEED all the possible weapons to help thin it out and eradicate it from my lungs. I am thankful to have GSH available too me before all the popular research catches up.

What was interesting to me at my last appointment was that my doctor mentioned they are doing a study on GSH at Emory (which is my clinic). She never mentioned it to me before and definitely knows that I have taken GSH in the past with great results. So, as Hope mentioned in her latest post, the research is underway and we will be hearing more about its use in the near future.

My mutations are DF508 and N1303.

I hope that Ashleigh is only having a temporary set back and is on her way to recovering from this soon!