I'll admit I was in denial when DS was first diagnosed; however, we still continued to do cpt and nebulized meds, etc. Figured "when" they figured out it was all just a big mistake, big clerical error that he'd have the healthiest lungs around. Our problem was that he'd had a blood test locally we were awaiting the results from that one, hospital did one but didn't get enough blood, so that one was inconclusive and then the so-called gold standard sweat test came back normal. So even though we had a definitive diagnosis from the first blood test and meconium illeus at birth, I still had my doubts.
His CF doctor in the City also explained to us that CFers are born with normal lungs; however, because it's a progressive disease, evenually the lungs will become affected. I even sometimes wished that we hadn't found out right away, so we could've just ENJOYED our son as a baby, with normal baby things instead of nebulizers, medications, enzymes...
What really hit home for me is the first time he cultured pseudomonas.
Anyway, we have a very agressive, proactive cf clinic in the City 250 miles away and a more reactive one locally. So a lot of the people we come into contact with locally, don't do CPT, etc. unless the lungs are affected. So a few times a year, we take a long weekend and go to the City for DS's appointments and still see a doctor at the local CF clinic.
As far as peppermint water, as long as it works -- what does it hurt.
His CF doctor in the City also explained to us that CFers are born with normal lungs; however, because it's a progressive disease, evenually the lungs will become affected. I even sometimes wished that we hadn't found out right away, so we could've just ENJOYED our son as a baby, with normal baby things instead of nebulizers, medications, enzymes...
What really hit home for me is the first time he cultured pseudomonas.
Anyway, we have a very agressive, proactive cf clinic in the City 250 miles away and a more reactive one locally. So a lot of the people we come into contact with locally, don't do CPT, etc. unless the lungs are affected. So a few times a year, we take a long weekend and go to the City for DS's appointments and still see a doctor at the local CF clinic.
As far as peppermint water, as long as it works -- what does it hurt.