Help in testing
So my daughter is 3 almost 4 months. I did the testing and so did my oldest daughter, dont have or carry CF but my infant does carry with a low sweat test under 60 and has symptoms. I was told its possible for that to happen. Now! My daughters father will NOT get tested. His family refuses as well. I recently learned he has another daughter around 1 and I cannot find her (cue random lump sums of missing money from account). They said they need him or his brother or a child of his to get a full testing to narrow down what may affect her and what we can do now. I have more testing on the 14th so i dont know much. Can someone...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 6, 2015 Category: Respiratory Medicine Authors: Kayla Rudder Tags: Newly Diagnosed Source Type: forums

PCD panel results....more testing
As we wait to see a new doctor at Riley Hosp, we got results from the PCD panel. This is what my message said: results show that she is heterozygous (has one change) for a variant of uncertain significance in the DNAH11 gene, which is a dynein gene. The change found through testing is a variant of uncertain significance, which means that there is not enough evidence to know for certain if the change is benign or if it is associated with PCD. Because Claire has symptoms that are suggestive of PCD, we are somewhat suspicious that this variant could be significant, and we will request insurance authorization for deletion/dup...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 5, 2015 Category: Respiratory Medicine Authors: mom2girls Tags: Newly Diagnosed Source Type: forums

Diagnosed at 36
Hi everybody, I joined the forum when i was diagnosed with cystic fibrosis this summer, but for some reason I couldn't post under my old screen name. I was diagnosed in July after my pulmonologist did a full panel of bloodwork. I had previously passed 2 sweat tests. I have moderate bronchiectasis and am culturing m. absessus. I spent 4 weeks on iv antibiotics this summer and got pancreatitus as a side effect. This was my drs big hint. As i said in the title i am 36yo. I had no idea anything was wrong with my lungs till i got pregnant with my now 4yo son(carrier-d1125h). At 5 weeks pregnant i had my first and only real...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 2, 2015 Category: Respiratory Medicine Authors: alikat0079 Tags: Newly Diagnosed Source Type: forums

Please help! Possibe CF? Sweat test needed after rectal prolapse in 2 1/2 year old
Hello, This is my very first time posting here. I never thought I would find myself posing questions in regard to CF and my children, as I thought any fear of CF would have been completely put to rest by my prenatal testing and newborn screening. Apparently, as I am learning, this is not always the case. I just got back a little while ago from an over night stay at a children's hospital following my daughter's first experience with rectal prolapse. After speaking with the gastroenterologist at the end of her 24 hour observation period, I learned that it is protocol to send children her age with rectal prolapse for a swe...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 1, 2015 Category: Respiratory Medicine Authors: Drai5 Tags: Newly Diagnosed Source Type: forums

zythromax long term?
Hi. No diagnosis yet for my 8 yr old daughter. Just had more blood work done today. Waiting on results of PCD panel. Depending on results, will see CF doc in WI or head to indy or cincy. So, daughter was sick recently. Xray showed probable partial lung collapse and possible pneumonia again. Trying to get sputum sample from her. Pulm wants her on zythromax MWF all winter. I don't know what dose but pharmacy double checking before dispensing b/c high dose. I guess this is used as preventative for inflammation. Anyone heard of this? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - November 21, 2015 Category: Respiratory Medicine Authors: mom2girls Tags: Newly Diagnosed Source Type: forums

Please help!!!
i HAVE A 14 YEAR OLD SON THAT HAS HAD HEALTH PROBLEMS HIS WHOLE LIFE. HE HAD RSV WHEN HE WAS A FEW WEEKS OLD, FAILURE TO THRIVE AT A COUPLE MONTHS OLD AND PNEUMONIA EVERY WINTER FROM AGE ONE UNTIL ABOUT 11. WHEN HE WAS 4 WE NOTICED HE WOULD WHEEZE AND STRUGGLE TO BREATH WHILE WATCHING TV WHICH WE THOUGHT WAS WEIRD BUT WOULD ALWAYS SELFCORRECT IN A FEW SHORT MINS. AFTER A FEW MONTHS WE NOTICED THAT HE WOULD STRUGGLE TO BREATH AND THEN WOULD END UP IN THE BATHROOM WITH DIARRHEA.....EVERY SINGLE EPISODE!!!! IT STARTED OUT HAPPENING ONCE A MONTH AND PROGRESSED INTO 2 OR 3 TIMES A WEEK. WE TOOK HIM TO MULTIPLE DRS AND HOSPITALS...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 14, 2015 Category: Respiratory Medicine Authors: kadesmom Tags: Newly Diagnosed Source Type: forums

Daughter has PCD- Primary Ciliary Dyskinesia
I recently posted a thread about my 7 year old daughter. She has symptoms of CF but very low sweat test results. One of you nice people posted about PCD- and that is exactly what the Pulmo Dr thinks she has. Everything that is written about PCD relates it to CF and says the treatment is identical and problems are similar- just caused by different disease. No wonder it was so confusing! She's have CT of lungs next week, along with bronchoscopy. We're starting the acapella device today. Saline breathing treatments. Continued treatment for asthma- although at the moment the immunologist and pulmonologist think she may not e...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 4, 2015 Category: Respiratory Medicine Authors: Janae Warren Tags: Newly Diagnosed Source Type: forums

gene c.3140-26a
I just found out the other mutated gene that my 2 month old son has. He has the deltaF508 and gene c.3140-26a. I think this gene falls into the Class V cartegory but I am not positive. I am wondering if anyone else has experienced this combination or can help shed some light on what Class V is. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 29, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: Newly Diagnosed Source Type: forums

How positive have the tests been?
My son is 7 weeks old. He had a sweat test two weeks ago and it came back at 81. since then, his other tests results have been as follows: Throat culture - normal pancreas - well above normal and dont need to give him the creon anymore live level - normal white blood cells - normal chest x-ray - clear all other blood levels - normal. we are waiting for them to finish the genealogy on his blood to find the other mutation and go back on wed for another sweat test. how likely is it that he doesn't have CF or is just borderline????? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 23, 2015 Category: Respiratory Medicine Authors: iwuvwoo Tags: Newly Diagnosed Source Type: forums

Could it be CF in my 14 yo?
My son is 14 years old, weighs 78 lbs and is 4'10". He has had a cough for 2 years now and asthma among other things have been ruled out. He has had pneumonia twice and bronchitis once in this time. He is currently under the care of an endocrinologist because of his growth issues. He is falling farther and farther behind. His latest labs show his FSH to be very low and his LH to be low but not out of range. His vitamin D level continues to stay low despite supplements for the last year. It is currently at 21. He has always struggled with constipation and very large BM's. As an infant he had the same cough he has now t...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 21, 2015 Category: Respiratory Medicine Authors: snowborden1 Tags: Newly Diagnosed Source Type: forums

question about sweat test results
Hello everyone, my 11 week old daughter was recently diagnosed with c.f. and I had a question about the sweat test. First a little background - at 2 1/2 weeks old our ped gave us the news that our daughter's prenatal screening had found she had 2 gene mutations (the d508 one and another that only one other person has ever been diagnosed with 1331n). They then made us wait til she was 12 pounds to get the sweat test. So earlier this week we had the test done and her levels were at 102, which the doctor said was very high and definitely positive. He said that the levels don't necessarily determine how severe a person's symp...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 16, 2015 Category: Respiratory Medicine Authors: Martina Banks Tags: Newly Diagnosed Source Type: forums

Trying to figure out how accurate the sweat test is before tomorrow
My son is 6 months old. Since he was born something has always felt a bit "off" for lack of a better word. His stools have always been bright green with mucus, he's had a chronic cough that is consistantly getting worse, he was always crying until about a month ago, he's always breathed funny, and he is always congested. I've been to several doctors, most of whom blew me off and told me it was a milk allergy or reflux. I tried reflux meds and a total elimination diet at first for months but neither helped. Finally I found a pediatritian who listens to my concerns. She sent me to a GI specialist who didn't feel li...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 15, 2015 Category: Respiratory Medicine Authors: aleutenberg Tags: Newly Diagnosed Source Type: forums

So confused....no diagnosis...stop looking?
Looking for confirmation my 8 year old daughter doesn't have cf. Wondering what is going on. Has environmental allergies (as shown on skin tests 2x). Diagnosed with asthma 2 yrs ago due to cough...no wheeze ever. Last school year had bacterial pneumonia in Sept (x-ray at er) and bacterial pneumonia in May (2 night hosp stay). Possible pneumonia in mid June...treated but no x-ray. In past has seen GI for possible reflux and genetics b/c she didn't sweat. Sweating has slowly started and they think possible connective tissue disorder. Recurrent pneumonias have lead to numerous tests. She's been doing really well since increa...
Source: Cystic Fibrosis Newly Diagnosed Forum - September 24, 2015 Category: Respiratory Medicine Authors: mom2girls Tags: Newly Diagnosed Source Type: forums

Lifetime of undiagnosed GI symptoms + asthma and waiting for genetic testing
(Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - September 16, 2015 Category: Respiratory Medicine Authors: shretl Tags: Newly Diagnosed Source Type: forums

Looking for more information.
If I test positive for one copy of the R117H-7T mutation and 7T. Does this mean I have Cystic Fibrosis? I was told I am a carrier of the gene. I will not get into see a doctor for another week to discuss results. I am concerned and hoping for more information, if possible. Thank you! (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - September 5, 2015 Category: Respiratory Medicine Authors: MattieG Tags: Newly Diagnosed Source Type: forums

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 says "...
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 test he...
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

Should it be considered?
I know that we are supposed to trust our doctors. They've gone to college for many years and they know a lot. I'm currently 15, a female, and I've had many problems with my doctor. He diagnosed me with asthma about a year and a half ago, and for the most part, I accepted that. But my mom was diagnosed with CF when she was pregnant with my little brother. He was tested, but I never was. My mom brought that up to him when the asthma meds weren't having the desired effects, but he simply told her the tests she had must have been wrong and that she didn't have CF. I unno he's a doctor, and maybe he's right, but I am just so ti...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 21, 2015 Category: Respiratory Medicine Authors: tiffanymarie316 Tags: Newly Diagnosed Source Type: forums

CRMS baby and sweat test results
Hi everyone! Baby is now at 5.5 months, and we just completed her 2nd sweat test Monday. The results came back at 22 and 20--it went down from the 33 and 30 when she was 25 days old. So I think it's safe to say, she falls into that category that is defined at CF being very unlikely. I'm thinking our situation disproves the thought that 2 mutations equals CF. Any thoughts on this? I'd like to think that this is the end of it all, and the book is closed on the guessing game of whether or not she will have CF, but I don't think it's that simple. I think we still wait, we still watch, and if anything presents, it presents ...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 20, 2015 Category: Respiratory Medicine Authors: Mama2Five Tags: Newly Diagnosed Source Type: forums

26, just diagnosed, advice/input/kind words welcome.
Hey guys, whats up? Here's my story.... For the past 6 months I've been having bad stomach problems, hard time keeping food or liquids down, throwing up after meals because I was too full, etc. I ended up losing around 40 lbs and just feeling not myself. I went to numerous doctors, got cat scans, and enoscopy, etc over the summer and basically they just gave me ppi meds for acid reflux and shrugged their shoulders. After months of the same story, I went to Robert Wood Johnson Hospital in New Brunswick. NJ and was emitted. I was there for about ten days, mostly running the same tests, but the doctors actually believed me ...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 16, 2015 Category: Respiratory Medicine Authors: Mike Brown Tags: Newly Diagnosed Source Type: forums

update
Baby girl had her sweat test done today and came back once again borderline. Waiting on her blood work to come back. It's been almost a week now. Hopefully it will be back soon. Not sure where we go from here. We are in the process to getting a new pulmonary dr. Can anyone tell me....on an order form/script to have blood drawn for CF, her dr ordered a 32 analytical.... does anyone know what that means (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - February 11, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

Delta F508 & R117H 5T
............ (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - February 11, 2015 Category: Respiratory Medicine Authors: Allison Staley Tags: Newly Diagnosed Source Type: forums

question on mutations
my daughter is in the process of multiple sweat test for a diagnosis and just had her blood work done today. I have a thread in newly diagnosed on everything that is going on with her. I guess Im mainly here to ask about gene mutation. from what I have read online about cystic fibrosis is the gene has to come from each parent. first question: if the parent has the gene but no signs/diagnosis of CF is their gene mutated also? second question: with CF if my daughter comes back with a mutated gene, that means she got the gene from us her parents so does that mean we got the gene from our parents?? my daughters uncle is ...
Source: Cystic Fibrosis Newly Diagnosed Forum - February 7, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

struggling for answers
So last week I posted a thread on everything going on with my daughter. Long story short we had one sweat test done, came back elevated/positive for CF. Pulmonary doctor sent us to a CF center had another sweat test done. They actually did 2 different types yesterday. Results came back borderline/positive with these 2 test. Her pulmonary doctor told me I need to stop worrying he doesn't feel she has CF he is done testing. Told me he doesn't know what's wrong and we should just go on about our life as she just has a cough!!! 😠😠😠 any ways I guess I really like to know other parents input on what I sho...
Source: Cystic Fibrosis Newly Diagnosed Forum - January 29, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

nebulizer
Any body have any ideas on how to give my 21 month old her nebulizer treatment without fight? She was good first few days now she screams hits, gets so bad she start coughing so bad 😢 I've tried letting her play with her tablet, letting her "be a big girl and hold it" tried bribing her with gummies. Gave the treatment to doc mcstuffins and Sofia even me n her daddy. Nothing. She screams like she is scared 😢 (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - January 23, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

new need opinions
Let me start from the beginning.Last December my daughter was diagnosed with malabsorpation. She was 10lbs at 7 months old. We seen a gastric specialist. Changed diet etc. She gained weight and doctors were happy. When she turned a year old in may we discovered she is lactose intolerant. It progressively got worse until 3 months ago. The middle of October my daughter formed a nasty cough and runny nose. Doctors told me it was viral.for a month my daughter would cough so bad at night it would make her sick, keep her awake. She would scream in her sleep. (Not night terrors) finally I got fed up. My daughter was suffering. I ...
Source: Cystic Fibrosis Newly Diagnosed Forum - January 21, 2015 Category: Respiratory Medicine Authors: jabug8 Tags: Newly Diagnosed Source Type: forums

REGISTER NOW FOR NEW PARENTING TELECLASS: Winning with CF
REGISTER NOW FOR NEW TELECLASS: Winning with CF: Tools, Tips, and Tactics for Raising Healthier Kids™ Dear Parents and Guardians of Kids with CF, Wouldn't it be nice to know about the parenting potholes in the road of life with cystic fibrosis so you can avoid them? A new parenting teleclass (by phone on Sunday evenings) starts on January 18 which will help you along the way. Discover how to: Motivate children to make wise choices about food and medication.Put an end to power struggles, arguing, whining, and complaining.Promote responsibility without nagging, lecturing, yelling, or bribing.Recognize and avoid common p...
Source: Cystic Fibrosis Newly Diagnosed Forum - January 2, 2015 Category: Respiratory Medicine Authors: LisaGreene Tags: Newly Diagnosed Source Type: forums

False negative sputum culture?
How often are sputum cultures false negative? My son is currently recovering from a month of sickness including sinusitis that then settled into his chest. His sputum culture was taken 3 days after he finished 10 days of amox and had just started 3 days of augmentin. His sputum was thick yellow good sample and came back normal. I suppose he could have viral pneumonia but I almost wish it was something so we could do something besides empiric therapy. He is being treated with oral antibiotic for one month now and getting better along with albuterol/pulmicort. Any insights? (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - December 30, 2014 Category: Respiratory Medicine Authors: Julie7 Tags: Newly Diagnosed Source Type: forums

18 years old possible CF.
Hi, I have had sinus issues and stomach pain for a long time now and have also coughed up sputum a lot. Recently, I have been having pneumonia due to Staphylococcus Aureus (7 times now.) and hospitalized twice. My pulmonologist send me for a sweat test and it came back as likely having CF. In my most recent hospital stay, I also had a bronchoscopy which came back containing Aspergillus Fumigatus, Candida Albicans, and Staphylococcus Aureus and the doctor mentioned my lungs kinda resembled someone with CF and in my first stay I had been diagnosed with bronchiectasis. Anyone ever have a similar situation? (Source: Cystic F...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 28, 2014 Category: Respiratory Medicine Authors: Lookapancake Tags: Newly Diagnosed Source Type: forums

CF Limbo-Update on immunodeficiency
My 11 year old son has been in limbo for 5 years now. I've posted here before but I have new information. Stomach pain started at age 7. Chronic sinusitis and bronchitis. Cultured stap and h flu so far. PI diagnosed at age 8 via pancreatic stim test. Enzymes treated for 8 months with improvement until age 8 when acute event of partial SBO and acute pancreatitis landing him in hospital for one month. He is treated at Boston Children's hospital via the CF center. Conflicting opinions so enzymes were removed. Currently he is 9th percentile for height with decent BMI. DNA sequencing done 5 years ago finding 2 copies of M47...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 19, 2014 Category: Respiratory Medicine Authors: Julie7 Tags: Newly Diagnosed Source Type: forums

Bowel Movement issues
Hi everyone! So our baby is now 3.5 months and we're dealing with bowel movement issues that she's been experiencing since she was 3 weeks old. She poops only twice a week--on the third day. Her NP and dietitian have been watching it, recommending prune juice and at our last appt her dietitian wanted to introduce miralax. However, her NP was uncomfortable with that because she is so young so she encouraged me to continue trying to give her prune juice. Unfortunately, she just doesn't like it and won't take it. She had an xray last month and while there was a moderate amount of stool, there was no blockages. Since we...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 18, 2014 Category: Respiratory Medicine Authors: Mama2Five Tags: Newly Diagnosed Source Type: forums

Pseudomonas and Balancing Work & Treatment
Good morning. My 8 month old daughter had a cough for 5+ weeks and the CF clinic asked us to bring her in for a check. She dx as CRMS due to her mutations (DF508 and F1052V) and is tracked by our local CF clinic. F1052V is very rare and causes CF in some, and not in others. Her lungs sounded clear so the doctor told us to start CPT 2x/day to see if that helped. Her theory was that this wouldn't hurt her and COULD possibly help her. They did a chest xray which showed bronchitis of some sort but no pneumonia and the doc said her lungs sounded perfectly clear. Well...two days later I get a phone call from the nurse. My daug...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 11, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums

Working Towards Diagnosis - Fearing CF
Hello everyone! I have a 17 month old son who I fear may have CF. He is in the process of being worked up for poor weight gain, malabsorption, and iron-deficiency anemia. Among his symptoms, include poor weight gain (he's in the 14th percentile), malabsorption (he eats like a linebacker and at 17 months old still hasn't tripled his birth weight), has increased fat in his stool, has microcytic/iron-deficient anemia despite being on the max dose by weight of iron, has a persistent, phlegmy cough (he's in daycare, had RSV at 5 months old that did not require hospitalization but has never seemed to clear this cough/cold since ...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 8, 2014 Category: Respiratory Medicine Authors: ChelseaLu Tags: Newly Diagnosed Source Type: forums

When to call?
Good morning. My daughter has been diagnosed with CRMS. She has df508 and a mutation with varying consequences f1052v. Apparently f1052v causes CF in some, but not all it's patients. So my daughter (8 months old) is tracked at a CF accredited center and has been doing well with no symptoms to date. She got a scary high fever last month and our pediatrician instructed us to take her to Children's Urgent Care. This center is affiliated with her CF doctor's and communicated with them to ensure she was being tested for everything she should be. The doctor said she had a diminished lung (meaning it didn't sound as healthy) but ...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 2, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums

Newly Diagnosed via Newborn Screen - Help!
Hi all, We are new here as our daughter was just diagnosed at 8 days old via her newborn screen. We are a little overwhelmed and have some questions we hope the CF community or other parents might be able to help us with. Her mutations are G551D and D1152H, anyone else out there with that combination? We have been asked to collect a stool sample and take it to the lab for testing. Turns out, this has been nearly impossible as she is exclusively breast-fed and her stool is very watery and gets absorbed by her diaper. We have tried lining her diaper with Saran wrap but the stool just runs around it and gets absorbed by the...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 21, 2014 Category: Respiratory Medicine Authors: greenjune Tags: Newly Diagnosed Source Type: forums

Adults and older CF patients regarding the CF centers and getting diagnoised.
Hi everyone. I posted a long story here and being so overwhelmed my self and many questions I think I just confused things. Now just a question in regards to the CF cents. How rare is CF in adults over 50? Are most CF centers aware of the newly diagnosed older generations. Is it so rare, that even with a Positive Sweat Screening test and symptom's, (but say you have other condition's because you are older) That a CF center would be more swayed to think it is not CF. I would like to hear from the Over 50 CF.ers or ones diagnosed later in life about there story to get diagnosed.. I am in the process, of now getting a second...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 12, 2014 Category: Respiratory Medicine Authors: madmax33 Tags: Newly Diagnosed Source Type: forums

Not diagnoised yet, later in life. Need some advice 59 yrs old
Hi Everyone. Been reading and watching some post on here for some time. I have suspected CF for about 10 yrs now during my research and looking for answers to why I have been so ill. I am chronic now with many health problems and not doing well. I have had Many allergies, Chronic Asthma, Chronic Broncitus, IBS, Gastritis, IBD, Pancreatis, Spasm tic colon, colitis. (this have been the many diagnosis over the yrs. In 2010 I lost weight and went down to 80 lbs could not keep any thing in me. Had malnusorption disorder. the most frustrating thing is, to be so ill I am being so ignored by the medical community and being treate...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 11, 2014 Category: Respiratory Medicine Authors: madmax33 Tags: Newly Diagnosed Source Type: forums