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Negative sweat test but lots of mucus
Well our 7 year old daughter came back negative on sweat test. Which is a relief but leaves me puzzled. My neice is a carrier. We just found that out. My daughter has to "heeeave" throughout the day, every day, to work up the mucus and spit it out. It is just part of our daily life. I just don't know what else would be causing all this chest mucus? Any ideas? I hear it is very rare to get false negative on sweat test, even for an atypical cfer. Perhaps her original diagnosis of asthma is correct? I just don't know. We've watched videos of asthma and CF on YouTube together. The asthma videos she...
Source: Cystic Fibrosis Newly Diagnosed Forum - August 20, 2015 Category: Respiratory Medicine Authors: Janae Warren Tags: Newly Diagnosed Source Type: forums

R117H, original carrier diagnosis but should we retest?
My son is 3 years old and has a single r117h 7t gene. at 3-4 wks we did the sweat test and it came back normal around 14. At the time I never thought he was salty tasting. we actually didnt even know he was a carrier until a year and a half later when we continued to have loose stools and I came back to having to do the sweat test and requested the documents of his newborn screening. Suprise to me, I did not know that my state automatically tested for common mutations after a high IRT level. Fast forward and over the last 2 years he has seemed to taste saltier and saltier. So much so that if he sweats at all its like licki...
Source: Cystic Fibrosis Newly Diagnosed Forum - August 18, 2015 Category: Respiratory Medicine Authors: aphillips Tags: Newly Diagnosed Source Type: forums

Recently diagnosed at 31
Hi! My name is Krystin, I'm 31 with two kids and here's my story. December 2012, I was at the beach enjoying myself in a hot tub. Two days later, I started coughing. Productive coughing. I assumed it was bronchitis and went along with my life for 6 weeks assuming it would go away on its own and not wanting unnecessary antibiotics. I broke a rib coughing, so it forced me to the doctor. Diagnosed with bacterial bronchitis and sent home with antibiotics. Nothing. Called the doctor telling them the cough was still present. Stronger antibiotics. Nothing. New doctor, new visit and given 2 antibiotic injections in my booty, stero...
Source: Cystic Fibrosis Newly Diagnosed Forum - July 13, 2015 Category: Respiratory Medicine Authors: Krysm3 Tags: Newly Diagnosed Source Type: forums

Possible CF (input please)
Hello all. I am a 20 year old male, and was recently tested via sweat test for CF. I received the call five days ago that I did not have CF due to the results, but I am not fully confident (as online research has led me to discover that in some, albeit very few, cases, the sweat test may produce normal results despite the patient having CF). Here's why I am not fully confident: 1) I was diagnosed with asthma at a young age--however, this asthma is so mild that it has a negligible impact on my life as of now. I need to take two puffs of my albuterol inhaler MAYBE once a week, if not less than that. I do not usually need i...
Source: Cystic Fibrosis Newly Diagnosed Forum - June 11, 2015 Category: Respiratory Medicine Authors: alex852 Tags: Newly Diagnosed Source Type: forums

Possible cf
Hi everyone my story is a bit complicated. Im 23 years old and when I was 18 I was given a genetic test for CF and it came back negative the reason my Gastro dr ordered it was because of acid reflux, elevated lipase levels and sludge in my gallbladder which since then has been removed. Just recently my new gastro dr told me about the possibility of CF. I only have one person on my dads side that has CF no one on my moms. I don't have the typical CF symptoms just occasional unexplained shortness of breath, frequent respiratory infections severe acid reflux and persistent low vitamin d levels. My gastro dr said that I could ...
Source: Cystic Fibrosis Newly Diagnosed Forum - May 29, 2015 Category: Respiratory Medicine Authors: Jessica Gomez Tags: Newly Diagnosed Source Type: forums

3 Year Old Just Diagnosed - Help!
My son was diagnosed at birth last year. His three year old sister was recently tested and has CF as well. She has been a picky eater from birth. She is not underweight and her vitamin levels are all good, though she is severely pancreatic insufficient. She refuses to take her enzymes (the answer to everything is "no" these days) and she doesn't eat anything we can hide them in (mostly hard foods or dairy products) and she chews everything. She is, thankfully, willing to do her breathing treatments, but it's killing me that I can't get her to take her enzymes. Does anyone have any advice? Our medical team s...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 29, 2015 Category: Respiratory Medicine Authors: Kirio Tags: Newly Diagnosed Source Type: forums

Looking for Help/Clarification on CF
Hi, I am new here and hope this is the right place to be. My daughter is 17 months old and has a long, complicated medical history including severe reflux, aspiration, lyrangomalasia, Failure to Thrive, severe central and obstructive apnea, low muscle tone, many sinus infections, and wears orthotics to help her walk. She has been hospitalized 7 times and had surgery where they did a nissen fundoplication and G-tube at 3 months old. She also has problems with digestion (large amounts of undigested foods in stool) and has a hard time gaining weight even with the G-tube. She also has re-current infections and has never respon...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 24, 2015 Category: Respiratory Medicine Authors: Kathryn Sneed Tags: Newly Diagnosed Source Type: forums

mstein just diagnosed with cystic fibrosis
Hi everyone I am a 56 yearold female and I was just diagnosed with cystic fibrosis. I am very scared. The doctor is doing gene testing on me to see how severe I have it and they did a bronchoscopy and biopsied that. The biopsy showed a bacteria in my lung so they re trying to find which bacteria it is. In the meantime I am on pulmazyme neubulizer treatment. My whle body hurts Im coughing my chest feels tight I am always tired. If there is anyone out there could you tell me your story being diagnosed as an adult and how you are coping. because Im so angry that I have this. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - April 11, 2015 Category: Respiratory Medicine Authors: mstein Tags: Newly Diagnosed Source Type: forums

Cough question
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 ask anesthesiology if they could culture any secretions they encountered, they said that is not something they do. :( She has had this chronic, productive, daily cough since this past October. Last Friday she had tubes put in both her ears d/t failing her hearing test, large amount of fluid behind her ears and 6 ...
Source: Cystic Fibrosis Newly Diagnosed Forum - April 9, 2015 Category: Respiratory Medicine Authors: Makmomma2 Tags: Newly Diagnosed Source Type: forums

atypical form of cf diagnosis
Has anyone ever had the phrase atypical form of cystic fibrosis thrown at them? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - April 2, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

updat/questions
So a few months back i posted about my daughter and these sweat test. Finally got in to see the CF doctor personally. He looked at my daughters results ans told me flat out he was very baffled on every thing. He said that he has never seen someone have 2 sweat test done at different times and come back with exactly same results both times. He checked her out. Told me by looking at her that he doesn't think she has CF. But because of her sweat test and symptoms he did a lot of testing. First test he did was he swabbed her throat. He said that the culture did grow staph but that was normal in a non cf patient. Second t...
Source: Cystic Fibrosis Newly Diagnosed Forum - March 21, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

Awesome CF Ed Day in Richmond, VA area on March 28- open to all
Are you in the Richmond VA area? Saturday, March 28 at 4 pm, Children's Hospital of Richmond is hosting a great CF Family Education event with Michael Boyle speaking (he did the NACFC keynote last fall, fabulous) and me AND my teenage son talking about parenting kids with CF. I hope to see you there! PS: It will be a dinner meeting and is free and open to all CF families and friends throughout the state whether or not they are a part of the CF Care Center at VCU. Details are below. On Saturday the 28th of March from 4 to 9 pm, the CF Care Center at VCU, the VCU CF Family Advisory Board, industry sponsors and the Virginia...
Source: Cystic Fibrosis Newly Diagnosed Forum - March 18, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Newly Diagnosed Source Type: forums

Misdiagnosis?
So my family doctor diagnosed my mom with gastric reflux several years ago. When she was pregnant with my younger brother, she found out she had CF. Now he's telling me I have gastric reflux. He won't schedule a sweat test, maybe I'm just overreacting? Can gastric reflux be in any way related to CF? Or maybe mistaken for CF? Sorry I've just been sick for so long and I'm tired of going back and forth and getting different diagnosises, I want to know for sure what's wrong with me so that I can get treatment that will actually help. I'm just tired. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - March 18, 2015 Category: Respiratory Medicine Authors: tiffanymarie316 Tags: Newly Diagnosed Source Type: forums

Sweat test scheduled...I have so many questions
Hi there. I have four children ages 8, 6, 3.5 and 21 months. My youngest is being tested for CF. My 6 year old was tested when he was 3, and his first test was inconclusive, his second was negative. My 21 month old was sent to a pediatrician (he normally sees a NP a family practice) because of his small stature. He is still in 6/9-9/12 month clothing , weighs 20 lbs on a good day, and is 30.5 inches. He has a wonderful appetite and eats a variety of foods. His stool has always been bulky. With whole food, stringy mucus at times, and very greasy/soft/SMELLY. Since my older son (the one who was previously tested) also had/ha...
Source: Cystic Fibrosis Newly Diagnosed Forum - March 18, 2015 Category: Respiratory Medicine Authors: 1princess3princes04 Tags: Newly Diagnosed Source Type: forums

CF and natural options... ???
Hi, I am asking on behalf of my friends who have a 4yo son with CF... what are natural options in such cases? Thank you! (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - March 13, 2015 Category: Respiratory Medicine Authors: Purusha Tags: Newly Diagnosed Source Type: forums