ecorn-cf: App. question list

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Topics

CF research: Are there any tests done in Belgium to cure people with CF ?; 13.07.2009

Stools: What is so different in the stools of toddlers with CF. I know that the stool is greasy, but what about the colour? And are there many undigested particles in it ?; 13.07.2009

CF: Which food is not recommended for patient with cystic fibrosis? Sincerely, Medical student of Vilnius University; 13.07.2009

PTC 124 Trials: Could you possibly let me know about the progress on the PTC 124 drug, if any? Regards Tandey Muller"; 09.07.2009

lung transplantation and cats: Dear ladies and gentlemen, Prof. Dr. TOF Wagner wrote on the 31.01.2008 on the topic transplantation and possession of pets "in general are healty pets and especially dogs, which are additionally vaccinated, no special risk, therefore one could say: no concerns..." Now I work myself at a children's kardiology ward and from that, controversial points of view on the topic organ transplantation and animals are known to me. Especially having a cat at the time point of transplantation is seen very critically. Furthermore I have been in hospital for i.v. course of antibiotic drugs, where a nurse (admittedly very placatively argumenting) said to me, that possession of cats would make a "listing" impossible. Admittedly my health state is still quite good, so that a transplantation seems still far away, however I am still very irritated, as my husband and I are owners of two very nice cat ladies (only living in the appartment, no toxoplasmosis). I would like to know the latest update in science or simply your opinion on that. Many thanks!; 09.07.2009

Azithromycin at chronic PSA: Dear expert team, my 11-year-old son is chronically colonized with Pseudomonas aeruginosa (PSA) for one year (FEV1 98%). He inhales 2x colistin and 1x DNAse. We consider, in case his lung function should worsen, to try azithromycin. - how is the effect of this antibiotic on the PSA ? (by which mechanisms) - how compatible is it? - which dosage and time of taking it would be optimal for 40 kg and 1.49 cm? Many thanks for your assesesment!; 09.07.2009

PEP-therapy or flutter: My daughter, nearly 5, has a stay in hospital behind her, where the physiotherapy has been shown to us. We have been up to now several times at a physiotherapist, who recommended the usage of the flutter to us. Now, at the CF center, they have shown us the therapy with the PEP-mask. What is more efficient? Or does it not matter, what we use? It seems to me, that the PEP-mask is more difficult to handle than the flutter. On the other hand, one can control the expiration better with the PEP-mask. What would you recommend? Many thanks.; 09.07.2009

Port-hygiene: Dear expert team, I would like to know, if there is a guideline in Germany for the hygiene of the port (disinfection etc.)? Unfortunately, there are big differences between the childrens' out patient departments and the adults, which does irritate me as a patient totally. From sterile gloves, face mask to hardly disinfect the hands you find everything. Yours sincerely,; 09.07.2009

Dogs and CF: Dear expert team, I live together with my girlfriend, am 31 years old and have CF in a very good condition. My girlfried absolutely wants to get a dog. Are there any concerns about this? Is there a risk of infection for me? Which risks could there probably be? Many thanks; 09.07.2009

Screening for Cystic Fibrosis gene: How do I check if I am a carrier of the Cystic Fibrosis gene?; 09.07.2009