I suppose I'm curious about how Stanford patients are treated in comparison to my daughter with UC Davis. Aside from her treatments (CPT 3x daily x 20 mins, albuterol inhaler, AquADEKS, enzymes), I was wondering if their protocol calls for adding anything beyond what we're already doing. I'm also curious about frequency of routine doctor visits, cultures, and other testing. As of now, Ellie has only had one culture, no scans, etc....and her doctor hesitates to actually run cultures unless there are concerning symptoms. I think he's trying to avoid antibiotics until necessary and doesn't want to "treat" her unless their is truly a problem (i.e., culturing certain bacteria may not actually mean anything unless she's symptomatic)....
Overall, I'm just curious how their "plan" differs from our current plan - since Dr. Mark is so revered, I was curious what his (or Stanford's) protocol may be....