ecorn-cf: App. question list

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sweat test: I would like to ask what kind of test is necessary to exclude the possibility of CF in a child. Does the sweat test suffice, and if it is negative should we repeat the test?; 12.06.2012

chronic pseudomonas: I cannot understand why my child after the treatment is clean, but after 4-6 months he has pseudomonas again. What are we doing wrong? Can there be something in the environment of the child? What should I pay attention to? We are tired with this situation. I hear about other parents who say that their children are without pseudomonas for two years and I get disappointed. We have not spent one summer free of treatment for the last 4 years. The test we do in June is always positive for pseudomonas.; 12.06.2012

chronic pseudomonas: When does one talk about chronic Pseuodomonas? How long does it take to cause gross damage to the lungs?; 11.06.2012

drug for pseudomonas: Good evening. I have pseudomonas in my lungs since many years ago. I follow a treatment with tobi® and tadim® (colistimethate sodium powder) interchangeably. Is there a medication that is cheaper than tobi?; 11.06.2012

low growth: I have a three year old child with low growth. The sweat test was done in Thessaloniki and it was negative (16), as well as the mutation check for the mother in Laiko Hospital. Are there any other things to do to exclude CF? Thank you.; 11.06.2012

sweat test and low growth/failure to thrive: I would like to ask what are the chances for a child to have low growth, a negative sweat test and have CF? What can a parent do to exclude the possibility of the disease? Thank you.; 11.06.2012

Staphylococcus aureus: I am 29 years old; I am coumpound heterozygous for deltaF508 and R347P mutations. I was chronically infected by Staphylococcus aureus and took Minocycline since 2006, because of frequent exacerbations and recurrent use of intravenous antibiotic courses. With this treatment I feel very well. Recently, my physician has changed and he stopped my treatment because there wasn't Staphylococcus aureus in my sputum anymore. I am very worried because my previous doctor has recommended to maintain the treatment for all my life!! My question is so: is it a good idea to stop the treatment?; 11.06.2012

perspiration odor: Hello, I have CF with significant symptoms recently (2789 5G coupled with D508) I'm 50. I noticed recently a change in odor of my sweat: the soap is not enough to stop it. Previously I was sweating a lot, but was almost odorless. Do you think this much stronger smell means worsening of the disease? And also the fact that I barely get warm and sweat a lot, this can change in an hour, despite a fairly stable room temperature? This idea of increasing problem worries me a lot, and if it is not associated, thank you to say it. And if it does, thank you also to tell me. Do CF people sweat more than others? Could this be related to a peripheral temperature of the body abnormally cold? THANK YOU to be there to inform us, and answer me. Cordially.; 11.06.2012

chronic fatique: Hello, I'm 34 and I have cystic fibrosis, with a FEV1 of about 40%. I sleep at least 10 hours a night and I often need to recover in the day also. So I spend several days a week to sleep. Fatigue is mutli-factorial and complex, but I wonder if those adults with cystic fibrosis suffer from it often and much. Thank you for your response.; 11.06.2012

Meveol®: Hello I have a 4 month old baby suffering from cystic fibrosis. I have heard about Meveol® as a treatment that would be quite effective against recurrent infections. Could you give me some news regarding the research about this drug. Will this drug be available for children? Thanks in advance; 11.06.2012