ecorn-cf: App. question list

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Risk behavior and CF: Hello. I’m preparing a thesis on risk behavior and CF patients. To this end, I’m looking for CF patients (or someone who knows) to answer questions, including CF patient and alcohol, tobacco, non-observance, sport ... Thank you in advance and continue to beat you so! PS: If health care professionals may be interested, I think this would be more interesting for my memory...; 10.11.2011

Bronchitol®: Hello, I’ve just seen that Bronchitol® should be commercialized in Europe. Is this medicine for all cystic fibrosis patients? What are the advantages of this new medicine ??? Thank you for your answer; 10.11.2011

Symptoms in healthy carriers?: Hello, At time of diagnosis, I was told that healthy carriers showed no symptoms. After meeting other parents of children with CF, I realize that many of us have chronic respiratory or digestive problems (asthma in my case). But I don't know if these observations are representative of all parents. I wondered if a study was conducted on the subject. That is a question I have been asking myself regarding the brothers and sisters as we do not know if they are carriers of one mutation or not. Thank you in advance for your answer.; 10.11.2011

cystic fibrosis diagnosis: Please advise wich clinic is more performant for diagnosis, treatment and monitorisation of this disease, for a 6 months old infant in Europe. Thank you; 10.11.2011

diagnosis and treatment centres: Hello. I have a 6 months old boy; after being diagnosed with gastric reflux and pneumonia, he took a sweat test. He was hospitalized approximately for one week before the test and in this time he received perfusions and he was treated with ranitidine, cefozoperazone, acetylcystein, salbutamol and fluticasone for pneumonia and reflux. Because the result of the test was high, 120, Kreon treatment was recommended. The boy is well-fed, he hasn’t had weight gaining problems and besides the fact that he coughed but not so much, he does not have any other symptom of this terrible disease. Nevertheless, the result of the sweat test is very high. Initially, we have been told to repeat the sweat test in 3 weeks and also take a genetic test. But now the doctor called us in 2 days to repeat the sweat test, although the 3 weeks haven’t passed. Because we think the diagnosis was established to easily, we wish to take our son in a specialized clinic in Europe. We found references for 2 clinics in Germany and one in Italy. Can you guide us to a specialized clinic? What do you recommend us to do? Thank you with all our hearts!; 10.11.2011

aerosols with colistin: What`s the amount of saline solution for aerosols colistin dilution?; 10.11.2011

could Pulmozyme® be prescribed by the family doctor?: I am from Constanta and I get the prescription for Pulmozyme® from my pulmonologist; for this I have to bring every month to the specialist the consultation form (from family doctor), certificate of employee from my place of work and the evidence that the employer paid the insurance fees. I have one monthly admission, although I am not staying in hospital, and I receive than the prescription and get the Pulmozyme. My question is: is there a legal framework for Pulmozyme® could be prescribed by my family doctor? Thanks; 10.11.2011

sweat test for cystic fibrosis: Hello, I am 21 years old and over time I had repeated respiratory infections and pancreas problems (pancreatitis a few years ago I had). But now I'm the worst, I am having respiratory secretions in the throat and I think that I might have cystic fibrosis. I would like to know where I could make a sweat test in Bucharest. Thanks; 10.11.2011

antibiotic treatment: My son (25 years) is colonized by Staphylococcus aureus R (MRSA), Alcaligenes xylosoxidans, Aspergillus fumigatus. He has IV treatments over and over, the germs have become resistant to antibiotics. The Zyvoxid (Linezolide), is no longer effective. Can we hope that former antibiotics would become effective ? If antibiotic treatment is unsuccessful, what should we do?; 10.11.2011

F508del and 1717-1G greater than A in heterozygous condition: Can you say anything about progression of the mutations mentioned above? I was not able to find any information on F508 in connection with 1717-1G>A. Our son (6 years old) had intestinal obstruction at birth. Later he had to have nasal polyps removed. He is taking Kreon®/pancreatin 10.000 (ca. 5 capsules per day) and is developing well. His lung function is good too (he has a cough about once a year with antibiotic treatment). He has the typical round fingernails. Many thanks for your answer.; 10.11.2011