Topics

No segregation for Pseudomonas in hospital?
Hello, a friend of mine is at the moment in a large German University hospital (with its own CF center) due to an i.v. therapy. Unfortunately, he is sharing the room - even though he is private patient - with 3 other lung patients. One of those is colonized with Pseudomonas. My friend is at the moment free of Pseudomonas and has now extreme worries to get again Pseudomonas there in the hospital. The physician in charge said, that would not be dangerous. In spite of this, in the CF center and also at the physiotherapy, Pseudomonas patients are segregated from the others. How should he react now and what should he do?
23.09.2016
Lactoferrin
Hello, are there treatments or research regarding the use of lactoferrin as a bactericidal substance in cystic fibrosis?
19.09.2016
concert
Hello Our CF son is 7 1/2 years old. I would like to know if he could go to a concert: his sister will celebrate her 10th birthday, and for this occasion we wish to offer a concert visit to our children, but we are concerned that there will be too many people, the weather and the date (January so more sick people). Thank you in advance for your answer.
19.09.2016
Research Update
Hello, Could we have a French synopsis on positive results regarding research (Vertex, QR-010, PTC124, others?) for patient heterozygous for the F508del mutation? Thank you.
19.09.2016
Shortness of breath
Hello, my son (20) has had an infection 3 weeks ago and since then, he has shortness of breath when climbing the stairs etc. 2 weeks before, he had been to the regular check-up and everything was ok. Of course he had then made an acute appointment in his CF center. Nothing could be found when he presented there. Blood values were ok, sputum also – no germs, also auscultation of the lung did not show anything. He should not have shortness of breath normally, as everything is o.k. He is inhaling ipratropiumbromide and hypertonic saline 6% at the moment. The next check-up will be in August. We do not know what to do, as the shortness of breath is making his work hard (motor vehicle mechatronics). I would be very happy about advice. Best regards, T.
12.09.2016
Curcumin
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?
12.09.2016
Essential oil
Hello, I saw all the questions/answers present on the site concerning essential oil and aromatherapy. However, I do not know: In my case, I would like to put some drops of essential oil on a cotton or on a piece of wood (typify cedar) in my cupboard , and some drops on a cotton to fight against mosquitoes. Is it like a spray? The same question on the sprays of essential oil (pure-essential type), can one use or is to avoid it? Thank you
12.09.2016
electric kettle
Is there a risk for CF people to use an electric kettle ?
12.09.2016
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 on course meal)? For taking 3 doses of ADEC in the morning: it is 12 000 IU between vitamins A and D, it takes 2 capsules at breakfast? (1 for vitamins, one for breakfast so little fat)? Is it really a correspondence between IU (international units) vitamin marked on boxes (ADEC Uvestérol, A313 etc), and UI on the box Creon (U lipase activity 12,000 Ph Eur.)? Thank you in advance for your clarification, this point is not clear to us.
09.08.2016
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 to know a little more about certain foods to better enjoy them. Can you eat hazelnuts, almonds, walnuts (already shelled or still in the shell)? These products do not exist in pasteurized form, so maybe there might be dangerous mould spores in it? (I do course use common sense and always look at their appearance before consumption, but if they are in good condition, can we consume these products?) I like cooking, I recently discovered the gomasio. I'm not allergic to sesame. Could I consume this condiment (Japanese condiment made from sesame and salt to sprinkle on cereals or salads. Sesame seeds and salt are lightly grilled over a wood fire and then ground to the grindstone. Each salt particle is coated with oil of sesame seeds. This coating does not mask the flavor or nutritional qualities of sesame, but allows better absorption of salt by vegetating). Can you use fresh herbs, garlic, shallot: can you eat them raw or must they be fully cooked? Regarding the salt, sugar, should they be refined (this process purifies foods - meaning fewer germs - or can we consume the whole cane sugar and whole salt? I'm sorry to ask you these questions but they really take my head and keep me from enjoy. Thank you for your attention to my request.
09.08.2016
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