ecorn-cf: App. question list

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Way of action nasal spray: Hello, In the internet pharmacy there are 2 different sprays: one with the substances dexpanthenol 10mg, sea water 250mg/ml and one with the substances natriumchloride-solution, isotonic 1ml/1ml. What is the difference between those 2 in their way of action and can both be used for a longer period of time? I have massive problems with the formation of crusts and barks since the last operation of polyps 8 years ago. According to the recommendation of the ENT-doctor I use a drug with the substances verbena, elderflower, sorrel and primrose blossoms and use the nasal shower. Which of the 2 sprays you would recommend to me? Many thanks for your answer; 04.10.2010

Question concerning hygiene with nasal spray: Hello, via the search function I have just got the information, that it would be the best to buy products such as nasal sprays in the pharmacy. I use nasal shower and recently bought a sole sea water nasal spray in the drugstore. In the package leaflet it was written, that the spray should be used for no longer than 6 weeks. Now I am worried, that germs could raise within this time (Pseudmonas or others). What is your opinion about this? Can one ever use the spray without worries and if yes, how long? Many thanks for your answer.; 04.10.2010

Outpatient clinic Prague / Czech Republic: My daughter is going to travel to Prague. Could you provide me with the contact details of an outpatient clinic in Prague / Czech Republic for the case of urgency? Many thanks! WK; 04.10.2010

Nasal douche: Dear expert team! Our son (7) has a nasal polyp on one side. Currently, it is treated conservatively… our CF doctor supports regular nasal douches. Our ENT physician is against it since he thinks that the mucus might be mixed with bacteria and then might run to other areas. Which are the benefits and which the inconvenients of the nasal douche? Many thanks,; 04.10.2010

Treatment of Pseudomonas-colonization: Hello, I am 20 years old, male, CF, until now mild course of the disease. Besides Staphyloccus aureus, now Pseudmonas-germ has been found. How are the actual options of treatment? Is one now all the time susceptible to Pseudomonas, in case the germ can be eradicated with antibiotic-therapy and Tobramycin? Lung function is normal. Many thanks for your answer, Best regards,; 04.10.2010

Travelling by plane: Hello, we are planning a holiday on the Canary Islands with our daughter (actually 9 months, CF). Can we do this holiday without hesitation or does the about 4-hours flight present a great "danger" for her? Concerning e.g. the height, air-conditioning, germs, etc? Is she allowed to take a bath in the sea there and play in the sand? Her helath situation is stable, she has a fantastic development and the latest swab has been free of germs. We are planning in any case to inhale 2-times a day as is usual, there. Our out-patient departement recommended an "emergency antibiotic". What else should we take into account? Many thanks for your effort.; 04.10.2010

Pain/ partially fever under antibiotics: Hello, I am 25 years old and have for 23 years now a constant colonization with Pseudomonas. Since then, I inhale constantly antibiotics, since 1995 I do 3-4 i.v.-therapies a year, in between Ciprofloxacin in a 2-weeks on/off therapy. In former times this was not a problem to me, I was able to life my normal life more or less during the therapies. For about 2 years now I have, however, differing side-effects according to the drug, like fever, strong headache and pain in the limbs, fatigue and partially erratic mood swings. These stop one or two days after the end of the i.v.-therapy. At the same time my CRP is always increased and is partially after the i.v.-therapy higher than before. For 2 months I take 2x600 mgs of Ibuprofen daily, the inflammatory parameters have become a bit better. Nobody can or is willing to explain the thing with the antibiotics to me, slowly my acceptance of the i.v.-therapy decreases. Can one react allergic to antibiotics in general (I have tested meanwhile 6 different ones), e.g. on the dead bacteria? Or is the reason that I take some for so long time in high-dosage?; 04.10.2010

Pain: My daughter (CF, 18 years) has horrifying pain at her joints and "bones". They change from shoulders, neck, hips, legs....sometimes very strong, sometimes very weak. Now I have heard, that there could be a connection with CF. She can stand it sometimes only with painkillers. Where can I get some more information about a possbile connection?; 21.09.2010

Sinusitis: Hello, I have CF and problems with the sinuses for one year. When would surgery be advisable or urgent and how does such an operation proceed, especially which risks could occur? Regards,; 21.09.2010

Crumpled hands after water contact: Dear expert team, it seems to be that in CF-patients, hands get much faster crumpled in case of water contact then in healthy people (11 min). Keyword: Aquagenic Wrinkling of the Palms. Many children with CF are diagnosed troublesomely after many pneumonias, because a simple, for everybody recognizable sign of the illness is lacking, which is obviously present here. Would it not be desireable that this is gonig to be more public? Should this be passed as an "advice under parents"? Would parents be taken seriously who go to the pediatrician because their thin child, which is often ill, shows crumpled hands in water after 2 minutes? Many thanks in advance,; 21.09.2010