Finally told the doc!
Posted by Kim
on October 14, 2010, 8:38 pm
At our CF appt last month, I finally told them that we were doing the GSH oral and inhaled, and 'fessed up to not using Albuterol. Also asked about starting hypertonic saline. Well, reaction was better than I thought, but there was him-hawing and some face making about inhaled GSH. The doc and the resp therapist said they "weren't familiar with that protocol". So, I gave them this wesite and told them about some of Dr Bishop et al studies. They didn't like the hypertonic saline idea, as "its not been studied in children under 6" . They also do the first dose in the clinic b/c of the risk of bronchospasm. They recommended Pulmozyme. I agreed 2 try it for a month or so. But, I feel like we're sort of doing 2 GSH's... I don't see any difference with the Pulmozyme. I know she has gotten a stffy nose, itchy nose and watery eyes from it. Sometimes, I think it MAKES her congested sounding. My gut is thinking that the Pulmozyme may be thinning mucus, but is also causing some inflammation. No, I don't have function studies to back this up, just Mom observation. I remember, Hope, that u said the Pulmozyme can increase inflammation and that the GSH is an anti-inflammatory. I feel like a bad mom to not use the Pulmozyme, as I had high hopes for it to help keep her healthy this winter. Has anyone else had less than ideal results with it? Thanks!
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