Topics

Fountain water
Hello, We are planning a vacation abroad. The travel organizer informed us that all pools are filled with fountain water that is exchanged every two to three days. The tap water is also fed by this fountain. Can a stay for a CF patient be recommended? Best regards A second question has been posed on this topic by the same questioner after the first answer: "This is the information of the travel organizer; is usage okay now for a CF child? Kindly excuse all these questions.": "The water in the children's swimming pool is not rain water but water from our fountain. In the basin there is a constant fresh influx. Therefore, it is unchlorinated. The pool is emptied and cleaned bi-weekly approximately since strong solar irradiation causes a slight algae accumulation that we remove by steam blasting. – thus permanently fresh water from our fountain with drinking water quality."
09.04.2008
Pediatrician budget CF-drugs
Question and answer are special for the German medical system, therefore not relevant for the archive and have not been translated.
07.04.2008
Is the usage of ECORN-CF expert advice free of costs?
Is all this for free (registration, etc.)?
07.04.2008
Reflex massage
How is the benefit of reflex massage in CF, are there any intolerances? Is it advisable for severely ill CF patients not to do this kind of therapy due to side effects? Are there any parameters like pulmonary function or others for this kind of therapy? Many thanks.
21.03.2008
Training
My son (19 years old) suffers from CF since birth, including cirrhosis of the liver, pancreatic insufficiency, since 2002 diabetes - still on tablets - colonization with Pseudomonas, since 2006 colonization with Burkholderia cepacia - 2-3 times a year i.v. therapy. In September 2006 he started a training from the job center in Berchtesgarden (Germany). There he had to quit the training in december 07 because he was considered highly infectious for the other young persons. Does that mean as a consequence that he will not be able to take part in any training? Are there any regulations or conditions from the insurances? I hope you will be able to give me some tips. Many thanks vor your efforts. Yours sincerely,
21.03.2008
Is a single test certain?
Hello! I am 15 years old and about 6,7 years ago I underwent a sweat test for CF and the result was negative. Since some weeks however, I have possible sings of CF occurring with increased frequency. Now I would like to know if a single test can give a certain and irrevocable result...?
21.03.2008
Day light bath
Hello, I understand, that the recommendation to open the water taps for 1-2 min in the morning, to flush the toilet and to open the window shortly, is linked to a day light bath. What should I do, if a do not have a day light bath? Just to turn on the air conditioning or is this not effective? Do a have a higher risk, if I have no day light bath? Many thanks for your answer and best regards.
21.03.2008
recomended books about cf
Hi! I live in norway, and am a mother of a boy with cf.I am also a masterstudent in pedagogic, and i am about to write an academical desertation abot beeing parents /familie to children with cf. I do But i have difficulties with finding newer literature,and research, about this topic. Here on my spot cf is rare, only 250 people got it , so its a kind of unknown disaese, probably thats why there is so difficult for me to find "things" for my assignment. Does anyone have some recommendations, or ideas about academical books or research cocerning Cf_family ?? Thanks. Rita
17.03.2008
IVF and CF
The original German question "IVF bei CF" is not relevant for the English archive (financial support; country specific).
17.03.2008
CFRD / frequently decreased BMI in CF / Mitrazapin for off-label use?
Due to the stress reaction of the body of a patient with CF because of a permanent inflammatory reaction underweight is developing frequently in the course of time. Besides the probable increase of respiratory work and the probable decrease of secretion and activity of pancreatic enzymes the reason for that development of underweight is probably mainly the increased cortisole production and the resulting insulin resistance (among others). What would you think about the proposal to try an off-label use of Mitrazapin (e.g. Remergil) in patients over 16 years of age and with a pathologic cortisole level (would say increased level); a drug which is a secure and effective anti-depressive drug with mild and transient side-effects? The most frequently shown side-effect is weight-gain which is caused probably on the one hand by a decrease of the cortisole level and on the other hand by a blockage of the 5-HT2-receptor, which leads to an increase in appetite. The anti-depressive side-effect is not necessarily unwanted. An additional argument for a try of this drug could be a massive impairment of the sleep as a main symptom of a depression. A study about Mitrazapin for the use in anorexia nervosa can be found here: http://edoc.ub.uni-muenchen.de/5458/. In this study the influence of Mitrazapin on the cortisole level in the saliva has been investigated and additionally the weight-gaining effect could be shown impressively (however, probably this effect had also other reasons in the frame of this study). On a website (http://www.sanego.de/Medikament_Mirtazapin) asking systematically for subjective side-effects of drugs 83 comments out of 148 (would say 53%) mention a weight gain. The partly awkward BMI-situations in CF would absolutely justify this procedure in my opinion. Is it not possible to initiate a study on that topic? Yours sincerely,
17.03.2008
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