Topics

Refusal of MRI-investigation
My daughter suffers from CF with a severe pulmonary involvement. One year ago, a MRI-investigation had been done in order to find out if the mostly destroyed left lower lobe should be removed (because probably lesion). As the rest of the lung did not look much better, this was disregarded. Now another investigation should be performed. My daughter refuses this, even with anesthesia she does not want to have this done. I do not see the benefit of this, as an operation is out of question at the moment anyway and the child is doing bad very often, especially from the psychical point of view. Therefore we want to do only those things to her that have to be done absolutely (she needs oxygen 24 hours a day). Now we are put under pressure from the outpatient clinic. Am I allowed to refuse my assent for such an investigation?
08.07.2008
Examination by heart catheter
My son, 30 years old, advanced CF, runs an increased temperature of about 37.8 degree Celsius in the evenings. His doctor obviously does not attribute this to pneumonia. He rather wants to search for bacteria on the heart by heart catheter. I never heart of anything like that in connection with CF. Therefore I am sceptical and actually opposed to such an examination. The doctor, however, thinks it is absolutely necessary. (During IVs my son’s body temperature is normal and the CRP drops drastically.) I request a clear and open sentence if this invasive examination is in fact indicated. Thank you very much, With kind regards
07.07.2008
Pseudomonas in toothpaste
Is it true that Pseudomonas bacteria can contaminate toothpaste. Are there alternatives to evade this daily danger of colonization? Dr. Grün
07.07.2008
Again day light bath
Hi, I don’t understand whether air ventilation substitutes for day light bath and can eliminate Pseudomonas aerosols.
07.07.2008
To run off water reservoirs
I have read in diverse guidebooks that it is important to let water run off the taps, showers etc. in the mornings, before I myself as a CF patients am going to use them. Is one time a day sufficient, or shoud the procedere be repeated alfter a longer period of stagnation (e.g. > 6 hours, shower in the evening)? Best regards,
07.07.2008
Cleaning the teeth with tooth-jelly
A question concerning cleaning the teeth: Our dentist advised our child (CF) to clean the teeth once a week with elmex tooth-jelly. Is there any risk, Pseudomonas etc? Thanks for your answer!
03.07.2008
Question not relevant for Archive
The local German question ("Erstattung von Fahrkosten") is not relevant for the English archive since it is of local interest only.
02.07.2008
Next child
I am a father of a 4 year old daughter with CF. My wife and I, we are thinking about having another child, but 25% risk of having another CF kid hold us back in our decision. Therefore I want to ask, if there is any realistic chance of having a healthy child. I mean for instance methods of artificial fertilization. In Slovakia, in such families, amniocentesis is being done. If there is a positive result, there are two possibilities. We will have a second child with CF or my wife has to undergo abortion. My wife had a spontaneous miscarriage two years ago and it was very stressful. Thanks.
02.07.2008
Categories of illness
The original Q/A "categories of illness" is country specific for the Czech system and therefor not relevant for the Archive
02.07.2008
School – two children with CF
Hello, our son Dennis will start school in summer. Currently we learnt that there is already another child with CF at that school (third grade). Now our doctor is concerned, because the girl at that school is “badly off” and already had several bacteria, among them pseudomonas. Are we actually compelled to send our son to a different school? Many thanks in advance, Karin
26.06.2008
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