Topics

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
Mould in nuts
Dear experts, Is it possible that swallowing mouldy tasting nuts leads to an allergic reaction in the lungs of a CF patient (who also had ABPA (allergic bronchopulmonary aspergillosis) before)? Thanks for your answer.
22.01.2013
School Canteen
Hello, My daughter will start kindergarten in September. She has Cystic Fibrosis. I work and my daughter will go to the canteen and then I wondered if the canteen meals were adequate (Calories, fats and salt). If not, are packed lunches as those that already exist for children with allergy, a ...
22.01.2013
tap water
Hello, I am the mother of a little boy with cystic fibrosis and I am surprised it is not forbidden to drink tap water. My CF center tells me that there is no problem [translators comment: this question is from France, so the information is about the state of French tap water] but I'm stumped ...
21.01.2013
High-dose i.v. therapy with vitamin C (7.5g)
Dear expert team, Due to frequent infections (CF patient, 50 years old), my doctor suggested a high-dose vitamin C i.v. therapy (twice a week) in addition to taking antibiotics. This is supposed to strengthen the immune system as a supportive therapy. I am now wondering whether this makes ...
15.01.2013
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