Topics

PTC-124
Could you please give me some information about PTC-124. My children have the mutation F508/R553X. PTC-124 is according to my research only applicable for stopp-mutations. As a consequence also to the ones of my children? How far is the research on this field really?
16.06.2008
Pseudomonas in cistern water
In our house cistern water is used for toilet flushing. The cistern is below the gorund level and is a concrete construction. The water is very cold. Can Pseudomonas bacteria live under these conditions in the cistern? If so, what is the influence of temperature? Does chlorination or any other hygienic precaution for swimming pools help to eradicate the bacteria? Should we stop using this water for our toilet?
16.06.2008
alopecia (see question "Hair loss")
For 10 years I have alopecia. All laboratory tests are normal. Nobody can explain it.
10.06.2008
Air humidifier with UVC disinfection
Which experience is available for the use of air humidifiers with UVC disinfection in homes of CF patients? Can such humidifiers be recommended?
10.06.2008
Child's sport
My child who has CF whant to attend sport cluster. May I let him to do it? What sport is most beneficial for him?
10.06.2008
Titanium valve/ emphysema of the lung
Dear expert team, We got a request in reference to an article, which appeared in the internet under http://www3.ndr.de/ndrtv_pages_std/0,3147,OID4014800_REF2478,00.html . The question is if the method described there, using titanium valves at an emphysema of the lung in COPD can also be suitable in Cystic Fibrosis. Many thanks in advance for your efforts!
10.06.2008
American vest and inhalator in Germany
Dear Experts, We are living in the USA and have a 12 year old son, suffering from CF. We are planning to fly to Frankfurt for 2 weeks in the autumn, in order to visit my family. We are using a vest and I do not know if we can use it due to the current difference. Can we hire such a thing in Germany or would it be easier for us to find some kind of current transformer? In case he would be positive for Pseudomonas by then and we need an inhalator and Tobi, is it possible to get this in Germany with an American prescription? In case we need medical advice in Germany, can we go to the university hospital in Frankfurt or do we have to make an announcement before? I am not familiar with the German system in the out-patient departments. Many thanks for your help, Yours sincerely,
10.06.2008
Hypertonic saline
Hello, for how long can hypertonic saline (HS) be used? My daughter has inhaled it for more than one year, before she was on Amiloride. She expectorates better using HS. One of adverse effects is irritation of respiratory tract. Would not it be better to sometimes change HS with Amiloride? Thank You.
10.06.2008
Comamonas testosteroni im Sputum
What is the clinical importance of Comamonas testosteroni im sputum samples of individuals with cystic fibrosis? Many thanks for your answer.
10.06.2008
Antibiotics
The newspapers are full of warnings against the adverse effects of antibiotic treatment. My pediatrician tells me that frequent or long term antibiotic treatment is not good. The doctor in the CF center however, prescribes antibiotics whenever my child coughs. I do not know anymore what's the best for my child.
10.06.2008
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