Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 I posted a message about a month ago about medical care and cf infants. Several people responded with the very good advice to find a CFF Care Center. Unfortunately, the pulmonologist that the Cystic Fibrosis Foundation has accredited in our area is very uninformed about cystic fibrosis in infants. On our first visit he told us our son only had a mild case of cf, that cpt is trivial if the child stays active, and told me to " talk to my pediatrician about Zach's acid reflux " because he only handles cf problems. My pediatrican has stated bluntly that " CF is out of my league " . He also did not even ask about Zach's enzyme dosage or his cpt schedule. We eventually found out that Zach's enzyme dosage was too low and he was having malabsorption issues, not acid reflux. I immediately had my pediatrician do an out of network referral to a pediatric pulmonologist. It was denied. We are appealing the decision, but will not have an answer before Zach's next clinic visit. I am curious if it is possible to let someone at the Cystic Fibrosis Foundation know that one of their " accredited " doctors is spouting inaccurate information. I am sure this man is a qualified pulmonologist, but he is not qualified to be treating cf infants. It is because of this doctor's affiliation with the Foundation that the insurance company will not consider it a medical necessity for Zach to be treated elsewhere. Am I wrong here? Any advice would be appreciated. Sara - mommy to Zach 14 months wcf Quote Link to comment Share on other sites More sharing options...
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