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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 health...
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...
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 s...
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 ...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 11, 2014 Category: Respiratory Medicine Authors: madmax33 Tags: Newly Diagnosed Source Type: forums

worried about my daughter
Hi, I was wondering if I could get some help...when I was pregnant they found echogenic bowel on my 20 week ultrasound. It remained present until an ultrasound at 31 weeks where it began to "clear up". When my daughter was born she had two meconium plugs. Now when she has a bowel movement they are mucousy and still have meconium in them. She lost almost 1 lbs in the first 48 hours, but she is now thriving at a week old. Her newborn screening was normal. My doctor has contacted the CF clinic and we are waiting to see if they want us to come in for testing. I really want to push for a sweat test to make certain she...
Source: Cystic Fibrosis Newly Diagnosed Forum - November 7, 2014 Category: Respiratory Medicine Authors: Megan Roberts Tags: Newly Diagnosed Source Type: forums

Breathe Easy for a Little Girl Named Faith
This is my niece and she is the sweetest girl evvver! She was born with Cystic Fibrosis. We are trying to get her a new roof. As you can imagine the medical bills have piled up and once minuscule house repairs have become overwhelming. Mold and decay is a very scary threat for a child with her lung problems, please take the time to vote for Faiths new roof so that she may Breathe Easier! She has been blessed with a wonderful mommy, who is constantly advocating on her behalf, what a great opportunity this would be for their family! Thank you for your vote and please spread the word. TEAM FAITH! Breathe easy. For ...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 31, 2014 Category: Respiratory Medicine Authors: GracefullyDaph Tags: Newly Diagnosed Source Type: forums

Could I have CF?
I've had what has been diagnosed as horrible allergies my entire life. My nose is completely clogged 365 days a year, to the point where I basically can't breathe through it. What's worse is I have this horrible post nasal drip. It's so thick and copious that I feel like I am constantly choking. I'm coughing and sniffling literally every second of every day. Although I do exercise, I have a hard time breathing when I run. I often feel like I can't breathe deeply enough. I feel like I constantly have a sinus infection, I've had probably 2-3 a year for as long as I can remember. I've had my lung capacity tested before to see...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 30, 2014 Category: Respiratory Medicine Authors: Lannister Tags: Newly Diagnosed Source Type: forums

Which CF Care center to use??
Hi! I'm brand new here :) My name is Sarah and my 3 week old nephew was just diagnosed with CF. He was initially seen at UAB but we need to pick a center closer to home (Newnan,GA) so I wanted to see if anyone here had any experience with Emory or Scottish Rite in Atlanta. Is one better than the other for any specific reason? Any info would be helpful! Thank you! (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 28, 2014 Category: Respiratory Medicine Authors: sarahjacksonb Tags: Newly Diagnosed Source Type: forums

Here we go--baby cultured pseudomonas
So I received a phone call this morning that our 8 week old cultured pseudomonas (she also pointed out there there was a study awhile back that followed non cf newborns up to 1 years old and some showed pseudomonas as well, so it's possible). From what I understand, this is common in CF. Can anyone elaborate why? Is this type of bacteria also common in non cf folks like me, or my husband and other kids? She gave us two options-we can culture again, or we can go ahead and start tobi now-which we'd do for 28 days, culture again and continue another 28 day treatment if it was still present. On cff.org, it says that they do ...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 27, 2014 Category: Respiratory Medicine Authors: Mama2Five Tags: Newly Diagnosed Source Type: forums

just a question
my 15 daughter developed a nasal obstruction, had septoplasty and the doctor reported that my daughter had the worst adhesions he had ever seen. Within 2 months the adhesions were back, she developed a saddle nose, and she was snoring again. The lining of her nose is lined with sores and bleeds everyday, and she coughs all of the time. My daughter was sent to a Rhinologist who took one look at the lining, said it was allergies and she needed reconstruction. We were sent down the hall to plastics where the doctor took one look at her nose and said that he felt like she had a vasculitis called Wegeners Granulomatosis. She...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 26, 2014 Category: Respiratory Medicine Authors: jennn1971 Tags: Newly Diagnosed Source Type: forums

Resource web page for young children with CF
I have a two year old boy with cystic fibrosis and since learning of his diagnosis my husband says I've literally read the Internet on everything relating to the treatment of CF. I've been carefully saving the information I've gathered and I have now begun compiling it into a family friendly website that gives access to information and supplements that we as a family have tried and have had success with in keeping our little boy healthy. The website is still in its infancy but it contains a great deal of valuable information and is updated on a daily basis. And take a peek at the video and song we put together to raise ...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 19, 2014 Category: Respiratory Medicine Authors: littlemyth Tags: Newly Diagnosed Source Type: forums

Broncoscopy
My DS is getting fever frequently offlate and Sputum culture says there no growth what soever. His ped pulmonologist is suggesting a broncoscopy. Somehow we are not comfortable with the idea. We have never used pulmozyme before but want to use it before going for broncoscopy. I understand it helps bring out the sputum deep inside. Can someone please tell me if Broncoscopy is conducted on kids young as 3.5 yrs. Is it safe. What are there any guide lines for it in your respective countries. Please help. (Source: Cystic Fibrosis Newly Diagnosed Forum)
Source: Cystic Fibrosis Newly Diagnosed Forum - October 14, 2014 Category: Respiratory Medicine Authors: Mallika Tags: Newly Diagnosed Source Type: forums

momma's intuition
hi all! i'm sure you have a lot of concerned momma's on here asking questions about their babies symptoms. sorry to be another one, but i need some feedback... my son is 20 months old and has had recurrent bouts of wheezing and coughing since the age of 5 months. we have had 2 ER visits and 1 hospital stay (for the flu) last february. at that time a chest x-ray was performed which was read as "bronchiectasis". a follow up scan over a month later once he had recovered from the flu was unchanged. i am a physician assistant and know that bronchiectasis is not a normal or incidental finding. based off of my own res...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 14, 2014 Category: Respiratory Medicine Authors: kyelizabeth Tags: Newly Diagnosed Source Type: forums

Newborn Screening- NERVOUS WRECK PLEASE HELP!
Hello, I am new to this community and new to a health issue of this caliber. I guess my question for people out there is. I got a call from my doctor telling me that there is a more than likely chance my child has CF. I have two other sons who have not tested positive or even come up as a concern for CF. I have to wait for a swear test to tell if it is a yes or a no. They center is supposed to sit down with me and my husband and I have been worrying myself sick because I feel just so lost and stressed out over this whole ordeal. I just can't really get information that is completely accurate. Has anyone else been through t...
Source: Cystic Fibrosis Newly Diagnosed Forum - October 13, 2014 Category: Respiratory Medicine Authors: Worriedmotherof3 Tags: Newly Diagnosed Source Type: forums