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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 dele...
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 re...
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 s...
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 HOSPI...
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 m...
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 ...
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 sinc...
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
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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