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Thank you so much for your speedy responses.

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...

Its great to hear your doctor ordered the sweat test. Just continue to focus on his symptoms and not test results. My daughter will be two in January and has had issues her entire life: recurrent respiratory infections, chronic cough, chronic constipation, PFO, failure to thrive (weighs 19lbs-...

Thank you for your response Beccamom! Does your daughter pass the sweat test? It's so frustrating, I just want her to get the proper care. We found out Monday that the echo she had shows a possible PFO, (hole between atriums)but pediatrician says she doesn't need to follow up with cardiology...

Thanks so much for your reply! I fortunately was able to obtain her test results after calling the clinic again. They state the only mutation they were able to find was the delF508 and no other mutations were found :). Feeling much more relaxed. Thanks again and best wishes for everyone!

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...

Meabtahi, Thank you for sharing. I am so happy to hear that your daughter is doing so well and is able to access proper care if she ever should need it! I believe the best defense is a good offense, and knowing what we are up against will help us prevent further set backs and maintain the...

Thank you lovemyboy507, I appreciate the information, I will be giving them a call. I would love to know your story if you don't mind sharing it with me. I am collecting testimonies and information to present to my pediatrician to try and convince her that peoples experience with CF (as far as...

Thank you Ratatosk for sharing your stories. So interesting to hear how people discover this illness in so many different ways and at different times in their lives. We did not have the fecal test done yet. We go for our next Gastro appt this Monday so I may ask about that. I would be happy if...

Thank you so much Printer and Ratatosk for sharing your experiences with me. Printer, it is so wonderful to hear the positivity from you, thank you so much. When you turn to the big scary world of the internet for information you of course encounter the negative more often than the positive. I...

I greatly appreciate all the wise advise I am receiving, from the bottom of my heart thank you. I am a firm believer that we should maintain health rather than try to reverse damage. This wait and see does not sit well with me. And thank you Printer, a friends uncle who is a retired pediatrician...

Printer thank you so much for your response. I live in Lancaster PA. I know Hershey med has an approved CF clinic however I have Geisinger and they will not cover Hershey med center. I am just so frustrated that these doctors can't understand that I don't want to wait for her condition to...

We are currently on our 3rd primary care provider which is a pediatrician. I spoke with her moments ago and she says "we know she doesn't have CF because she passed the sweat chloride test, there really is no need for further testing unless she develops more respiratory symptoms". My response to...

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...

Thank you so much for your response. I agree, I am certainly glad they are referring her to ID. I just had confusion I guess with the "scant"-- maybe a bit hopeful too :). I am so glad to hear your response on the miralax. I worry about cutting back because then she gets EXTREMELY backed up and...

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...

thank you so very much!