ecorn-cf: App. question list

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Is the genetic testing of the father paid by the insurance?: Hello, we have a child (3 years) with CF, who has the mutation DeltaF508 homozygously. When the diagnosis was made we were told in the CF center, that it is recommended to us parents to let a genetic testing done sometime (our family planning however is finished, we have 2 children altogether). Now it is like this that my husband (46 years old) coughs strongly very often and is often phlegmy, he does not smoke. As a child he has been diagnosed to have chronic bronchitis. We would like to have a genetic test done. At the CF center we were told at the last investigation of our child that he should address to the human genetic institue within the center. This is really time-consuming, as the center is also over 100km away and my husband is busy with a lot of work. In our case, we do not see the sense of a human genetic counselling (something like this would probably be important if we would like to have more children). Is it not possible to have the blood sample taken without the counselling (e.g. at the general practitioner or at the center) with the explanation that my husband shows symptoms of CF (he has also frequently loose stools) or does this cause problems in the coverage of costs via the insurance? [Question from Germany] Many thanks; 01.12.2011

Antibiotics therapy (over three months) necessary?: Dear expert team, My daughter (CF patient, three years old, mild progression so far with only a few minor infections, completely without cough for three years except during infection times) was just diagnosed with an acute infection of the lungs with Staph. aureus (anti-staphylolysin positive). Recently she had bronchitis for the first time for about four weeks and since then has been having nervous cough every once in a while during days and nights. Apart from this, she is currently infection-free. The CF clinic suggested a three-month antibiotics therapy in order to decrease the antibodies again and possibly eliminate the Staph. aureus. What do you think about this? Do you consider the therapy reasonable? Many thanks for your answer.; 01.12.2011

problems of the stomach related to the cystic fibrosis: hello I am a high school student and we make a research on CF and I would like to know the main problems of the stomach and all the digestive system. thank you for your understanding while waiting for your answer; 29.11.2011

About CF: Hello I am currently in first class in high school and as part of my personal work supervised I want to know for how long the care given to people with cystic fibrosis are in place?; 29.11.2011

baby with difficulty in feeding: My daughter (3 months 1 / 2) has difficulty to breathe since yesterday. She is under cortisone inhalation. My problem is that she cries when I propose her the babybottle and she refuses to drink. Fortunately I do also breastfeeding so she drinks a little. Does the babybottle require too much effort? I tried with different nipples but no change...; 29.11.2011

How certain is the treatment for pseudomonas?: a)When someone is treated with ciprofloxacin for quite sometime with negative pharyngeal cultures and continues to take the medicine for a little while longer, what are the chances of getting reinfected with pseudomonas during the course of treatment, or immediately after its termination? What are the reasons for the continuation of tandim? b)After how long can the test trace the pseudomonas (today clean, comes in contact, what does the test show tomorrow?) c)Is there any chance that the test may be negative, but the patient has pseudomonas? After how many tests with negative results can I be certain that I am clean?; 29.11.2011

When do the real problems begin?: My child is 2 years old, has pancreatic insufficiency and no real problems with its lungs. Most days I even forget that it has CF, since the medication and physiotherapy have become a routine. At some point, though, this changes. Which age is this? Better yet, what are the stages of the evolution of CF according to the age and growth of a child with CF? I know that each child is unique, but certainly there must be a guide, this for infants, that for toddlers, this for children etc.; 24.11.2011

Physiotherapy at home with Mum: Guillaume, young CF patient, almost 12, is no longer able to do a good physio with a Physiotherapist in private practice. Does he have to do his Physio with his mother in the room where other parents and children are, when he is invited?; 24.11.2011

Ataluren® project (PTC124): Hello Could you please give me some news about Ataluren® project and if results will be available soon ?; 24.11.2011