Topics

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
Pulmozyme® Abdominal Pain
When my daughter does her breathing treatment with Pulmozyme® (active agent rhDNAse) she gets bad stomach pain. She doubles over in pain and it is hard to watch. When the Pulmozyme® is done it goes away. This happens every day, and I am just at a loss. She is crying and miserable. We use a ...
25.03.2013
Symbioflor® - recommendable or not?
Hello, for years I have problems with digestion after antibiotic therapies. A bacterial mis-colonization has been diagnosed several times, after the intake of Xifaxan® (substance rifaximin) the complaints were always much better. Unfortunately, I get the prescription for this only, if I have ...
25.03.2013
Abdominal pain
Hello, My 6-year-old daughter with cystic fibrosis, complains of very strong abdominal pain. Nothing to x-ray, nothing in the stools and pancreatic enzyme dose has been changed several times .. How con one relieve it??? Thank you because we don’t know what to do.
14.03.2013
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