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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
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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 sh...
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. M...
Source: Cystic Fibrosis Newly Diagnosed Forum - December 11, 2014 Category: Respiratory Medicine Authors: lauryn.tubes Tags: Newly Diagnosed Source Type: forums