Topics

Acinetobacter calceticus baumannii Complex
Hello, Is there a need/obligation for treatment if very low occurrence of the above mentioned bacterium was tested? Are there certain precautions that have to be taken respective other CF persons or physiotherapists? The symptom is mild cough. Inhalation with Tobramycin is done. Is that enough or should an IV be made to maintain the current good state of health? Many thanks.
12.06.2015
Periactine
Hello, Could you, please, talk about the use of Périactine to increase appetite and thus weight. I know that some patients use it but our CF center doesn't seem to know it. I wondered whether studies have been conducted on this medicine or if it's rather used in a isolated way. Thank you very much in advance for your answer. Sincerely.
07.06.2015
Liver and cytolysis
Hello I am worried for my 1 year old CF baby: according to the last checkup, he has a "mild cytolysis" of the liver, he takes Ursofalk, do you think it can progress to liver cirrhosis? Thank you.
07.06.2015
CF patient who doesn't want to have a treatment
Hello I just want to know if there is a study for the follow-up of CF patients who don’t follow any treatment, even when proposed?
07.06.2015
Phenotype associated to Genotype F508del / 3849+10 kbCT
Hello I am 5 months pregnant. My husband has got the F508del gene, and I'm carrying the 3849 + 10 kb CT. With 1/4 chance to transmit CF, I would like to know the clinical features. Best Regards
07.06.2015
Mutation G149R
Hello, I would like to know what is the class of the G149R mutation? Thank you for your answer
07.06.2015
lung and liver transplantation for cystic fibrosis
Hello, I have been lung and liver transplanted in 2009 for cystic fibrosis. I want to know what is bronchitis and bronchiolitis. Is is serious to have pus in lung which is removed by bronchoscopy? What’s happening if there is rejection? Thank you for your answer.
07.06.2015
ice cubes
Hello Are ice cubes dangerous for our CF child? Do we have to worry when we go to the restaurant? Thank you.
07.06.2015
Reliability of result throat swab/sputum
Dear expert team, I would like to know how reliable are throat swabs of children indeed and also sputum results of adult CF patients. We are having regular throat swabs of our 6-year-old daughter done, as we are cared for in two centers, it deals with different laboratories, sometimes also a swab is done at the pediatrician or the general practitioner. It is striking to me as well as to the physician in our center, that in one laboratory of one of our centers nearly never a germ is found, often the result is “normal flora of the throat”. In the other laboratories, however, there is always a germ found. I ask myself how this could be. Is it indeed as difficult to identify germs? Even when our daughter had the first finding of Pseudomonas, it had been found in the laboratory that otherwise do not find any germs at all, however at the next test 4 weeks later our daughter was said to be germ-free again. Two weeks later we had a regular appointment at the other center and there the PA was again in the throat swab. Now one could think, that children are not producing so much secretions, yet and dependent on the place where the germ stays right now, the laboratory can find something. However even in adult CF patients, who have sputum investigated in different laboratories on the same day or within 2 days, there are such differences. How can this be? I am so insecure that I cannot be happy about a germ-free result anymore, because I do not trust it. When doing the swab investigations there is always the hint on CF and on the longer incubation time, therefore I cannot understand how different the results are all the time. Probably you could enlighten this a bit. I would be thankful for it. Many thanks.
07.06.2015
Holiday
Dear expert team, We want to stay at a hotel in the mediterranean arrea. What has to be taken into account conerning the pool? Is there a danger of infection with Pseudomonas? In the Internet it is written about a freshwater pool, can one assume, that it is chlorine in it? Many thanks for your efforts!
07.06.2015
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