<P>I am so sorry to hear her result was abnormal. My DDs doctor wrote CFTR related metabolic disorder or Cystic Fibrosis on a few of his letters to our pediatrician. When I asked the CF nurse what it meant she said CFTR related metabolic disorder what was the doctor's write on baby's paperwork when the newborn test came back positive, but they had no symptoms. She did not know how it would be applied to my 11 year old, but said insurance may not cover her needs with it. Please let me know what you find out about that diagnosis. I hope it helps you get the treatment your daughter needs. </P>
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<P>We saw the pulmonologist and he is convinced my DD has a mucus clearning disorder. Her FEV1 is up to a lifetime high after 7 weeks of manuel chest PT while we cut her ashtma meds down to 1/4 her original dose, stopped her reflux meds, and stopped her allergy meds. We go next week for a physical therapy consultation and a trial with the VEST. Next step is bronchoscopy, but I am happy we are not waiting for a specific dx to start a treatment plan. He also did another sputum culture and stated her sputum was still yellow. </P>
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<P>Keep me updated. Your family is in my thoughts and preyers.</P>