PEG yes or no?
Our daughter, 8 years old, is 121cm tall and weighs 20kg. She has a lung function of 80 - Aspergillus could be detected during bronchoscopy. Since October 2015 she did not gain weight, in spite of the fact that she is eating. We had already nutritional advice. She refuses additional food ...
I have been told by friends, that the course of the illness of CF can be influenced positively by high dosages of curcumin. Are there any interactions with the CF-specific drugs and curcumin that have to be taken into account?
Question about food hygiene
Hello, I'm a CF mother and I have questions about my diet, specifically I would like to know if foods are discouraged for us because of CF. I've always had questions about my diet and potential pathogenic germs for me. So, I have deprived me of many things for 10 years. I would therefore like ...
Adjustment of Kreon dosage to vitamins
Hello, How to adjust the dose of Kreon to take it according to prescribed vitamins? Let me explain: if our children should take 1 capsule of A313, which therefore makes 50 000 IU of vitamin A, must we match the dose of Creon and give 5 capsules of Creon 12000 (+ the number of capsules based ...
Symptoms in case of CF carriers
Dear experts, My nephew is suffering from CF. I myself have not been tested, if I am a carrier. Two years ago, I had the accidental finding of an IPMN (intraductal papillary mucinous neoplasia) in the pancreas. These had been removed via a Whipple operation. At the control investigation, now ...
Endoscopy of the gut
Hello, Today I had an endoscopy of the gut. This was done, after I had lost uncontrolled greater amounts of stool in short time intervals. I am a 54-year-old CF patient in a relatively good health condition with an FEV1 of 50-65% (this varies according to the season) and I suffer i.a. from ...
Anal prolapse is getting more frequenct since beginning of the therapy with Kreon
Our son has digestional problems for a longer time and got about 5 weeks ago for the first time an anal prolapse. The tests that had been done then revealed that he suffers from CF and the anal prolapse is therefore regarded to be cause by the illness of CF. After the first prolapse, it lasted 9 ...
Hello, Could you tell me if Spirulina Bio, powdered, could be beneficial for my CF adult daughter? Is there a risk of bacterial contamination with this dietary supplement? She has an Aspergillosis. Thanking you in advance. Best regards.
Do CF and superfoods get along well?
Hello, My husband is suffering from CF and I would like to create our food even more consciously, i.e. to incorporate natural anti-inflammatory substances. Can one make a statement in how far superfoods, e.g. goji berry, salmon oils, curcumine are suitable for this? I am worrying that it could ...
Sleep and stomach pains
Hello Our son is 8-months-old. He was diagnosed at birth (deltaF508) and presents especially digestive symptoms improved by Creon (approximately 9000 before cq meal). We are very bothered because he never had a complete night since his birth. He falls asleep alone in his bed but has at least ...
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