Topics

P. aeruginosa and horse riding
My eight years old little boy is willing to practice horse riding. But I read that some animals carry P. aeruginosa and that we had to be careful concerning the risks of transmission while riding. Could you please give me more precise information on the subject? Thank you.
10.11.2011
diagnosis exclusion
Hello, I would like to know if there is any test that would exclude for 100% the existence of the disease. For example, a genetic test done for one parent, if it is negative, it is sure that baby can not have the disease. If there is a test please tell me witch one it is. Thanks
03.11.2011
cystic fibrosis
The genetic tests, which we've done both did not find any mutation for cystic fibrosis, although our child died because of this disease; was only detected 7T polymorphism both of us. We want a healthy baby, what we have to do?
03.11.2011
Playing the trumpet with CF
Dear expert team, Our son (8 1/2 years old, CF) is interested in playing the trumpet. Is this beneficial with CF or rather counterproductive, since possibly the pressure is too high fort he CF lung? Thanks for any information!
03.11.2011
Tyloxapol/ Tacholiquin® 0.1%
Dear experts, do you have any experience with tyloxapol (trade name Tacholiquin® 0.1% solution) in cystic fibrosis (CF)? After inhalation, the solution is supposed to loosen the mucus in a physical way so that coughing will become easier. Can this agent be recommended for CF individuals or are there restrictions (according to the package insert, the agent can be used by children as well as adults)? Many thanks for your answer and kind regards.
03.11.2011
Vaccinations
My son is 7 months old and was born with meconium ileus. He has F508del-p.Glu92X. He has had surgery twice so far. By now, he is doing well, although he is being treated against his disease, of course. My question now: since my son has had to endure quite a bit with his health, does he have to be vaccinated according to guidelines on top of all this? Is his immune system not able to boost itself, are these vaccinations really necessary? Thank you for your answer.
03.11.2011
F508del+R553X
Dear expert team, my daughter (now 12 weeks old) was diagnosed with CF at 6 weeks. The gene test showed the following mutations: F508del and R553X. Even though I am aware that progression can vary significantly, I would still like to get some further information on these mutations. I read that F508del usually causes rather severe lung symptoms, whereas R553X is supposed to have a less serious impact but to cause problems with liver function. Is this information correct? And can we hope that progression will be milder if “only” one serious mutation was found? Many thanks for your answer!
03.11.2011
CF camps
Why are CF camps no longer allowed? You can catch pseudomonas bacteria from other people (non CF) as well, isn’t it? Also, I can’t find clear (general) ‘conduct’ rules for people with CF. Do you know where I can find them?
31.10.2011
Further testing for rare mutations?
My partner is 35+ years old and is 21 week pregnant at our second child. After amniocentesis it was found that the fetus is a carrier of the DF508 mutation. Both I and my partner were tested for CF mutations. My wife is a carrier of the DF 508 mutation, but I do not carry a traceable mutation of the CF gene. However, I was offered the option to do further tests, that only became available to the lab this last month. These tests can trace rare mutations (5%). Can I benefit from this testing? What will the results of this testing mean for our 21 weeks old fetus?
31.10.2011
adolescence and cystic fibrosis
how can I help my 13 year old daughter while respecting her personality and her desire for independence. I am divorced and I live 450 km from her and I do not see often thank you for your help
31.10.2011
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