Doctors, Doctors and More Doctors

I am not updating as often as I would like, but we have been living in the Dr.'s offices lately. We were referred to another GI specialist who looked over some of Paul's records over the last 18 months. This Dr. was very surprised there weren't other tests run on Paul during his hospital stay last year. After examining Paul, Jr., Dr. Weinstock ordered a SWEAT test to be done at Children's to check for Cystic Fibrosis. He also prescribed Zifaxan to help kill bacteria in the small intestine. The test was done Feb. 15th and we got the results back later in the afternoon that Paul was out of the normal range. Normal is 0-40, and Paul tested a 50. When I got the call from Dr. Weinstock, he said the next step would be blood work. He also prescribed pancreatic enzymes for Paul to start to help him start digesting his food. The pulmonary nurse from Children's contacted me the next day to explain the protocol. She made an appt. for Paul to see the head pulmonary Dr. on March 11th, Dr. Sweet. She also explained to me they would need another SWEAT test, so we did the 2nd one on the 18th. That one also came back abnormal, but lower abnormal at a 43. She explained he is an A typical case and not a classic case. We are waiting for the blood results to come back to see what mutations have been affected. However, they are checking 97 mutations first and then 115. There are a total of 1500 mutations but not enough research to back the less common ones. In the meantime, the pediatrician has been in contact with Dr. Tarr's office at Children's and Dr. Tarr is talking to the CF Dr. who headed up the study on stomach pain in CF patients. He is also talking to Dr. Noon (not sure what he does). Dr. Tarr has all of Paul's paperwork from various Dr.s over the last 18 months and is meeting with other Dr.'s to review them and come up with a plan.