ecorn-cf: App. question list

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Travelling and CF: My girlfriend has a mild form of CF. We would like to go live abroad for a year. We have a full list of CF hospitals worldwide where CF specialists are available. But now my question is: which countries are OK to go to and which are not good, with regards to temperature, air humidity etc.; 29.01.2009

audiogram: Yesterday my 7 year old son had the annual check at the CF Centre. ERS, ultrasound was normal. We still waiting for culture result and some biological sample. We also met an ENT specialist who told us that the hearing test (audiogram) is pathological because of fluid accumulation in the middle ear and mentioned an operation for adenoid tonsil; we should meet him in 3 weeks. The boy had the same problem 2 years ago, he had some chamomile inhalation and everything was O.K. We mentioned to the ENT specialist, but he did not give us a clear answer. I would like to know if this is typical for CF and what can we do to avoid operation.; 29.01.2009

PSEUDOMONAS AERUGINOSA: My granddaughter Iris is diagnosed with cystic fibrosis complicated with P. aeruginosa. What do you think about the P.Aeruginosa vaccin? It would be helpful for her?; 26.01.2009

Diagnosis: My daughter is 16 years and will have a sweat test done this week. Now I read that this is only an option in young children. Is this correct? Does it occur that the diagnosis of cystic fibrosis is only made during adolescence?; 26.01.2009

cystic fibrosis: Why is it that one can not cure cystic fibrosis?; 26.01.2009

Elastase, CF and diagnostics: My 2 years old daughter is being examined for cystic fibrosis because she is growing poorly since the age of 8 months. There are no other complaints, but I had noticed before that her skin was tasting rather salty. They found 1 mutation, delta F508. For the other mutation sequence analysis are being done but we have to wait for months to get the result. The sweat test was done 3 times, it failed 2 times and once was a dubious result with rate 49 on the conductance measurement, elastase was fine 490. I wonder if she can have poor growth if the elastase is normal. De pediatrician said to us that it didn’t look good, but after the result of the elastase she said that it wasn’t certain that our daughter was suffering from CF. At this point we are rather confused. How should we think about the elastase and the poor growth? Our daughter is allergic for dairy and egg. Could she have CF but the poor growth not because of CF but because of the allergy? Or has some diagnosis been missed and is poor growth despite the good elastase secondary to CF?; 26.01.2009

Infertility: I have 2 sons of 29 and 27 years. Both are not known with cystic fibrosis nor with recurrent respiratory infections. Now it happens that my eldest son has been shown to have a form of CF with infertility. We were quite surprised by this. Do you know this type of CF where a person does not have any complaint but is still suffering from CF?; 26.01.2009

How long will it take to have the results of genotype testing: We know that my brother and his son are carrier of the Nordic CF deletion (c394del TT). My partner and I are planning to use ICSI. Because I may well be a CF carrier, we would like to be tested before we continue with this ICSI treatment. We however can only get an appointment with clinical genetics next year. My question is how long will it take for us to have the test results (are we carriers?) so that we know whether to continue with ICSI. Are we talking in days weeks or months? Thank you for your answer.; 26.01.2009

Results of I-neb, knowledge ?: Is there more knowledge on the i-neb?; 26.01.2009