ecorn-cf: App. question list

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Topics

What is known about anaerobic bacteria in CF?: What is known about anaerobic bacteria in CF?; 25.10.2012

Sauna: Are there any contraindications to using the Finnish sauna with CF?; 09.10.2012

Mutation 394delTT and R1162X: Dear expert team, My son was diagnosed with the above mutations. Could you explain to me the meaning and scope of this mutation and provide some general information on it? Many thanks!; 09.10.2012

Pseudomonas colonization when swimming in a lake or pool: Dear expert team, I have CF and am currently pseudomonas negative. I love swimming in a lake in the woods or in the pool. In order to avoid false positive sputum or throat swab results, I would like to know how long after swimming in a lake or pool pseudomonas can be traced in the respiratory tract. Or, to put it differently, how many days should I wait between swimming and doing a sputum test in order to avoid a false positive result? Many thanks for your answer.; 09.10.2012

disinfecting toilet: Hello, First of all I want to thank you for your answers so useful. My 2 year old daughter is potty trained since a few weeks and I'm wondering what you recommend to disinfect the toilet outside home. It seems to me that all disinfectants (wipes, spray) should be applied several minutes to be effective. What is your advice? Thank you in advance; 08.10.2012

Soda streamer: Hello, are there any objections to using a soda streamer when having CF? Thank you.; 08.10.2012

Mutation delta F508 and L227R: Hello my son (3 years) has these two mutations, but I can not find anything on the L227R. Can you tell me more, particularly its class? Do you think the new treatments that are being developed like VX770 will bring something in his case? Thank you very much; 08.10.2012

The expected level of illness: Dear reader, My husband and I are carriers of the CF gene. It concerns Delta F508 and N1303K. What can you say about the health of our future child if the child carries both mutations and has CF in that case? (we know that the chances are 25% in case of natural conception) I look forward to your answer. Sincerely, L.; 25.09.2012

worried mother: My 5 year old son, already had 30 treatments with antibiotics because of repeated airway infections: upper as well as lower airways. A sweat test was done. The result was 45. The test had to be repeated; the result of the second test was 32. The upper limit of normal is 30. Still our pediatricion stated this was OK, but why is the upper limit of normal then 30?? My son thus had a borderline result tiwce. He also uses Macrogol 10 to 20 mg per day. Otherwise he cannot go to the toilet. I am really worried; can someone tell me what to do. My son coughs terrribly and is sick more or less every 6 weeks. Who has useful advice?; 25.09.2012

Detection kit for Pseudomonas aeruginosa: Hello, The swimming pool, lakes, rivers cause every time for parents fear (Pseudomonas aeruginosa infection). Is there a kit for rapid detection of this bacteria? This would allow us to test several waters in the environment and allow us to better assess the risk for our children. We could imagine that it would be interesting to test pool water several times under several conditions (spring, hot weather, when there are many people, ...). Many parents would agree to invest in equipment in order to perform these tests themselves! What equipment is necessary? Wouldn't it be interesting that all tests on waters could be published on a website with conditions in which they were taken. In this way it would allow us to have better feelings. Thank you.; 25.09.2012