Topics

vitamins
Hello, should we take vitamins (ADEK) before breakfast or during it? Thank you.
08.07.2013
How likely is the diagnosis of CF?
Hello, I write here as I am nearly turning crazy because of the fear about my newborn daughter. It is like this that she has been born 2 weeks before the calculated birth date via cesarian section, everything looked fine. However, she did not evacuate the meconium. She had an ileus (meconium ...
01.07.2013
Impossible to make her eat
Hello, the girl of my brother who is 1 year and 1 month has cystic fibrosis, diagnosed at one month of age, and since this time she follows the necessary treatment, but unfortunately for at least two months she refuses to eat . The doctors have performed all the necessary examinations, but they ...
15.05.2013
Elastase: two different results
Hello, My 12-month-old son had last month an elastase assay which showed a moderate exocrine pancreatic insufficiency. 15 days later, a new analysis indicates that there is no failure. Which value should we believe? The only difference between the two tests is the type of diet. Can it affect ...
13.05.2013
Bronchitol® benefit
Bronchitol® is proposed to CF patients. Is the treatment added to inhaled hypertonic saline serum/ inhalation with salbutamole or does it subsitue the treatment? What about differences between lipromatase and CREON®?
13.05.2013
Elastase
Hello, Because having a cyst for many years that compresses the pancreatic duct, the gastroenterologist did an analysis of elastase. The result is 543 mg /g. Should we be worried about this or is it just normal? I saw that above 200 = normal subject, but with my 543 = am I wrong?
07.05.2013
Extremely distended belly
Dear expert team, anew I count on your knowledge and possible hints how we can improve the health condition of our daughter (21 months old, CF with F508del and R553X, severe pancreatic insufficiency). The problem is, that all attempts to cope with the extremely distended belly of our daughter ...
19.04.2013
Belly
I have a question, I (16) have per se already a big belly (respectively a bit a big one) due to CF and diabetes. However, now it gets worse, I have quite much air in it.... as it turs out to be worse and worse with the belly (thus bigger and all) this bothers me a lot...can one do something about ...
16.04.2013
Gastric problem
Hello, My daughter has always stomach problems that have worsened recently. I wonder if an infection in the esophagus (examination in progress) may cause a decrease in breathing because antibiotic treatments for her lungs turn out to be not effective anymore. Thank you.
26.03.2013
KALYDECO®
KALYDECO® is beneficial for the mutation G551D and some other mutations causing the same problem. I read that the KALYDECO® would neutralize gastric acidity. Am I to understand that this positive effect would apply also to the G551D mutation (and similar mutations) or probably to all patients ...
26.03.2013
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