ecorn-cf: App. question list

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Doubtful sweat tests- continued: I would like to thank you for your first reply. [comment of the ECORN-CF team: for better understanding of this question, please see former question and answer in the additional comment field below]. Regarding your questions, I and my husband were tested before having children, because my cousin’s daughter has CF. During my first pregnancy (2005) I had a CVS testing and the sample was send to the TDL GENETICS lab, in the UK, where it was examined for 33 mutations. My daughter was tested due to growth issues and the relative medical history when she was 3 years old at the genetics lab of Heraklin University Hospital for 29 mutations. My husband has been tested for 86% of CF mutations at the Horemio lab- Department of Genetics, Aghia Sofia Hospital. All sweat tests have been performed at Heraklion University Hospital. I do not know which methods were used. I should add here the test with the lowest values was done in 2005, whereas the rest of the tests were done 5 years later. Where can a full genotype testing be performed? Should we repeat the sweat tests? Do you think that we should visit the Aghia Sofia Hospital?; 27.10.2011

Swimming or something else?: My daughter likes swimming. Would she benefit from swimming in a pool? I visited the venue, the pool in open aired, but the inside of the building is very humid, with water everywhere. I would say that it is very clean, and there are a lot of people, aged 3-18 years. In the mornings everything is dry, but in the afternoon the situation is chaotic. My daughter wants to go to the pool very much. What should I do? Which criteria should I use, in order to select a sport for my daughter, which she will not have to abandon due to CF? Open spaces, closed spaces…; 25.10.2011

cleaning of nose: I am a mother of a child with CF. When needed, I suck out with a device the nose of my child to clean it (saline, sucking, cleaning). How healthy is this, since my child may have pseudomonas and the sucking is strong and goes deep inside me? Thank you!; 25.10.2011

CF child and pet: My daughter has CF and is 8 years old and in very good condition. She does not have pseudomonas. Her wish was a pet, so I got for her a Siamese kitten, which we keep in our apartment. The kitten is fully vaccinated and we have it for 6 months now. My friends insist that this is wrong and harmful for my daughter. Is such a thing possible? Till now I have not noticed anything different, just that my child is happier. What is your opinion? Thank you!; 25.10.2011

Cost of CF testing: How much does the testing for CF cost at Aghia Sofia Children’s Hospital Greece)? Can I be referred by IKA?; 25.10.2011

Diagnostics in case of diabetes: Hello, which test is used to diagnose a diabetes in CF at the moment? In the past, glucose tolerance tests have been performed regularly to me, now not anymore for years. When I pointed that out in the CF center, I have been told that today one would prefer the HbA1c value, as it would be more conclusive in case of CF. Now I found some articles, which come to the exact opposite conclusion and a yearly performed glucose tolerance test is recommended. What is right, then? Many thanks in advance!; 25.10.2011

Genetic testing of the parents recommended - why?: We recently got the results of the genetic testing of our baby - two different mutations. Now it says at the end, that a genetic testing of the parents, including counselling is recommended. Why? Actually it is clear, that she must have one mutation from me and the other from my husband. Is it important from whom she has which one? Does this have a consequence for a further pregnancy?; 25.10.2011

G542X & 2183AA mutations: I have an 8 months old baby with CF with the above mutations. What can I expect in the future from these mutations? From what I read on the Internet i am scared, but my baby looks just a normal one. When do the problems begin?; 25.10.2011

Bacterial density in sputum : is it reliable ?: Hello, What does the density of bacteria found in the sputum mean (result given by the microbial laboratory versus the lung reality)? And then, when extrapolating, is a variation of the bacterial density (increase or decrease within 6 months for instance) representative of the amount of bacteria into the bronchi? Is this density a scientific criterion for deciding a intravenous antibiotics course, inhalative therapy or other strategies? Thanks for your response.; 10.10.2011