Looking for Help/Clarification on CF

Hi, I am new here and hope this is the right place to be. My daughter is 17 months old and has a long, complicated medical history including severe reflux, aspiration, lyrangomalasia, Failure to Thrive, severe central and obstructive apnea, low muscle tone, many sinus infections, and wears orthotics to help her walk. She has been hospitalized 7 times and had surgery where they did a nissen fundoplication and G-tube at 3 months old. She also has problems with digestion (large amounts of undigested foods in stool) and has a hard time gaining weight even with the G-tube. She also has re-current infections and has never responded to antibiotics. Full immunology work-up found nothing. We have been looking for answers she was born and recently moved to Colorado Springs. Within a few weeks of seeing specialists here, they decided to do a sweat test to look for Cystic Fibrosis (it was done at a CF foundation accredited place with Colorado Children's Hospital). Her sweat test was intermediate borderline with the right arm being 46 and the left arm being 50. They tested for the more common forms of CF and they all came back normal and now are testing for the more rare forms. We should find out test results June 1st. In Georgia where we live before her pancreatic elactase was 196 indicating pancreatic insufficiency. They re-did the pancreatic elactase test here and it is now 372 - a HUGE discrepancy. The doctors are telling me they have never seen it go up only down and they are not s...
Source: Cystic Fibrosis Newly Diagnosed Forum - Category: Respiratory Medicine Authors: Tags: Newly Diagnosed Source Type: forums