Topics

Pancreatine administration
What are the exact effects of a) an over-dosage of pancreatic enzymes b) an under-supply of pancreatic enzymes?
04.12.2008
Inhalor and flutter cleaning
What is the best way of desinfication and cleaning of a inhalor and flutter?
04.12.2008
Sailing and cystic fibrosis
Which experiences exist concerning the hygiene of water reservoirs on boats during sailing trips and is there a potential Pseudomonas problem? If so, what precautions can be taken? Should my daughter participate or not?
04.12.2008
joint problems
My 13 year old daughter has CF and since 3 years now can’t stretch her fingers. Her joints are swollen and she has difficulty stretching her arms. Apart from not being able to stretch the fingers they function well. She has been free of severe lung infection for the last few years, but takes amoxicillin as maintenance antibiotic. Can these joint problems be related to CF ?
04.12.2008
Pseudomonas (1st question)
We have a patient in our clinic with Pseudomonas bacteria which are difficult to treat. Currently we rinse everything which gets in contact with the mouth, for example the toothbrush of the Güdeltubus (is being washed twice a day, in-between rinsed only), cottonwool sticks for the oral hygiene, medical drugs which are dissolved etc. with Bismark water Is that necessary or could we use tab water as well? Does a clinic bear an increased risk that the tab water is contaminated? Is it possible to administer the patient humid artificial ventilation or should we rather use HNE filter (which is what we are currently doing). (Humid ventilation surely would be better for his secretion, wouldn’t it?) Thank you very much.
03.12.2008
Permanent Cough !!!
Hello, My 13-year-old son has hardly been affected so far. The FEV was 95, little to no sputum. Since the beginning of June, however, he has had permanent cough, with the FEV dropping to 75, and a considerable increase of sputum. All tests carried out so far (MRT, CT, ABPA diagnosis, lung x-ray [translator’s comment: not sure about this term], blood tests) were okay. On prick testing, he reacted to molds, though, which were not detected during a throat culture test, however. ABPA diagnosis was negative. Neither several weeks of Budesonide inhalation nor a 3-day oral steroid therapy brought any improvement. A three-week stay on the Canaries did not change the results, either. As a final diagnosis, a BAL is to be done now. I am not thrilled about this, but since my son does not emit sputum, I do not have a choice. Perhaps there is a germ sitting somewhere deep down that cannot be detected by a throat culture test. Now, however, another affected mother told me that it was exactly the same with her son during puberty, and that during that time the sputum and cough often increase and the FEV worsens. I cannot imagine that, however. Since I am a nurse myself, I am beginning to feel really stupid. My son keeps coughing, and no abnormality is being detected. Can it really be connected with puberty?? Sincere thanks for your advice. Muckel.
03.12.2008
Vitamin E Dosage
Dear team, yesterday, my general practitioner cautioned me about vitamin E. He said it could cause lung cancer and other side effects. Therefore, my question is: based on the current state of knowledge, which vitamin E dosage (in IUs) is recommended for an adult CF patient with a complete pancreatic insufficiency and a weight of about 64 kg? Of course, the pancreatic insufficiency is treated with a plentiful substitution with pancreatine. Many thanks.
01.12.2008
Classic CF
Hello, our CF doctor told us that our son (now 10 weeks old) has classic CF. Until now (thank god!), he only has a pancreatic condition. After numerous tests, all other organs are normal. Nevertheless, apart from pancreatine, he is getting a vitamin compound and ACC juice and is gaining weight properly. He was born weighing 3880g and is now at 7100g, and just from breast milk alone. :-) This was all the information I have for you, and now my question: what does “classic CF” mean, and what do we have to expect, roughly speaking? Many thanks in advance…
01.12.2008
Smoking
I am 17 years old and was diagnosed with CF already after birth. I have had a boyfriend for a year now who smokes, also in his room, though only with the window open and never when I am around. When one enters the room, one does not smell smoke, but my lung function has decreased, and so I wanted to know if that could result from spending time in his room, even though I can really say that one actually cannot tell that someone is smoking in there. Thank you for your help.
01.12.2008
Is lung auscultation necessary?
I am asking on behalf of a friend who is a CF patient. My question: is lung auscultation part of the necessary physical examinations in the context of a quarterly clinic visit, if rale was noticed in the past? In the pediatric clinic, a physical exam (also of the abdomen as well as the mouth and throat) was common during every clinic appointment. In the adult clinic, my lung was checked (percussion and auscultation) only twice during the past two years (that is, over the course of eight visits), even though I indicated infections, whistling noise during breathing, increased sputum, and shortness of breath, respectively. After I asked for an auscultation once, my request was accommodated, but since then the relationship to the clinic has been strained. It was made quite clear to me that that was considered an inappropriate demand. In CF-Fokus, issue 3/2008, page 3, it says: “The results of lung auscultation are important for the prognosis, too.” How am I supposed to act in the future? Thank you for your answer.
01.12.2008
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