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Cystic Fibrosis Message Board


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Unknown Diagnosis
Nov 10, 2006
Long story, so please, be patient. My son, now 5, was born with Transposition of the Great Vessels (a heart defect). He had heart surgery at five days old and was in the hospital for 20 days. When he was 4 months old, he developed his first "pneuminia". Since then, he has been hospitalized 21 times with "pneumonia". He has had an extensive pulmonary and immonolgy work up. Tested for CF 3 times--all negative. He has been treated to Tulane in New Orleans and at Texas Children's in Houston. He had a sputum culture done last week and the Dr. called me and said that it grew Pseudomonas. I have been looking at different web sites about Pseudomonas and they always mention CF. But, he has tested negative 3 times. So far, the immunlogy work up has been negative. He is allergic to Dairy products. I would just like some advice as to what to ask the Dr.'s to do next. I am at the end of my rope. My child NEVER has had a clear CXR. Please, any help will be appreciated!!!! Oh, he has also had severe sinus infections and he growth is SLOW coming. The Dr. also told me to do CPT 1-2 times a day. He was using the VEST but that did not help him.
Terri





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