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My daughter recently had an endoscopy done. Anesthesiology told me "she had more respiratory secretions than we normally see, typically we see it if someone has a cold" According to her GI doc they "suctioned a great big blob out during extubation and said she should feel some relief now" I did...

Well my daughter had the fecal elase (not sure on spelling, sorry) testing done, doctor at CF clinic said it came back fine, no loss of pancreatic function, so relieved!! She also had blood drawn for the Ambry full screen. We waited a little over a month till the doctor called with results. He...

We met with a pediatric pulmonologist yesterday, FINALLY! We really liked him, he was personable and explained everything to us and seemed to have a very positive attitude about our situation. He ordered a chest x-ray and said he sees no evidence of any pulmonary damage and the diaphragm looked...

We have our first appointment at Janet Weis hospital in Danville. Any advice, opinions or tips?

My daughter had an appointment with her GI specialist yesterday who strongly believes CF is the cause of her health problems (or immunodeficiency). While examining the abdomen she says she is percussing the top portion of her liver about 3cm lower than normal. When I questioned the significance...

So my daughter who has had some symptoms suggestive of Cf but passed the sweat test has had genetic testing done. They tested for 97 mutations and they detected 1 copy of F508del. Should I push for further genetic testing? The message the pediatrician left me made it sound as if they would not...

So, I had my daughter's Doctor do a throat swab on her (they ended up doing a nasopharyngeal swab- which I think poses a risk that whatever shows up could have come from either the nose or the throat and the only way to be certain of origin would be to repeat the swab?) Anyways we got a call 2...

We had a follow up with GI doc yesterday. When I brought up the question of performing genetic testing she informed me that Morgan's sweat chloride results were 13 & 17 and "not even close". I did show her Morgans fingernails as they grow down around her finger tips. The GI doc then mumbled...

I am new to this forum so I apologize in advance if I don't post this in the appropriate place. I am the mother of 2. My son Mikhail will be 5 in August and my daughter Morgan turned 1 in January. I had a complicated pregnancy with my daughter, had bleeding several times (ultrasound techs...

I am new to this forum so I apologize in advance if I don't post this in the appropriate place. I am the mother of 2. My son Mikhail will be 5 in August and my daughter Morgan turned 1 in January. I had a complicated pregnancy with my daughter, had bleeding several times (ultrasound techs...