ecorn-cf: App. question list

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Sweat test borderline?: Hello, yesterday we have been with our daughter at a center spezialized in pulmonology, as asthma was suspected. However, as she has again and again vomited mucus in the mornings, they performed a sweat test. The value was 52 mval/l. The physician said, the value was normal, however our pediatrician said, it was borderline and recommends another sweat test. What is true now? What do you recommend? She is healthy, does not take drugs and the sweat has been collected for about 30 minutes. Best regards,; 28.02.2014

Medical interruption of pregnancy / cystic fibrosis: Hello, I am at present in the 7th month of pregnany. The baby has just been diagnosed with cystic fibrosis. I would like to know if it is possible to practice a medical interruption of pregnancy.; 27.02.2014

F508del+L206W mutations: Hello, we transmitted to our daughter the F508del and L206W mutations. She is one month old today and has already a severe gut disease (very short small intestine after a meconium ileus). The L206W mutation seems rare in France. What grade of severity of lung disease have similar compound heterozygous patients worldwide? Thanks you for your answer (support).; 27.02.2014

Product for household maintenance: Hello, I’d like to ask you what’s the best between alkali and bleach to wash floors at home, knowing that I use bleach now. Thank you for your answer.; 27.02.2014

Impairment of ventilation: At a routine x-ray in december an impairment of ventilation on the right side of the lung has been found in my 2.5-year-old daughter. She had been given an antibiotic, jumped a lot and inhaled a lot, because she had an underlying infection. Now, after about 6 weeks, a control x-ray had been done, the impairment of ventilation is still there. 2 therapeutic possibilities have been discussed: 1. bronchoscopy with rinsing of the affected side, 2. inhalation with Pulmozyme® (until now 2 ml Mucoclear® 3% (hypertonic saline) with 5 drops of salbutamol), These alternatives will be discussed next week by the CF team and we will be informed about the decision. Now my question here, what is the more reasonable approach in your opinion? Are there any other alternatives how one could try to get rid of the impariment of ventilation? Is Pulmozyme® be paid by all (also private ones) insurances at that age? Many thanks!; 24.02.2014

Ultrasonic tooth brush?: Dear expert team, our son (15) has constantly tenacious dental plaque. The dentist recommended an electirc ultrasonic toothbrush to him. Are there any concerns about this, can one eventually use it with boiled or sterile water? Many thanks in advance for your advice.; 24.02.2014

Oxygen supply of the lung: My 7-year-old daughter is under medical treatment in Spain since her 3rd month of life. She is suffering from CF and has now a lung volume of 35%. A transplantation is urgently necessary. For 10 month we have liquid oxygen for breathing via nasal tube at home. The physicians have NEVER offered this supply. Only on requesting it was possible without delay etc. It's my strong conviction that this "carelessness" of the physicians is the reason for the extremely bad health status of my daughter. If she had been able to breathe oxygen already for 3 years, her lung volume would be markedly better or am I doing wrong? Can somebody help me concerning legal measures on this? I want to prevent that this doctor will go on causing damage!!!!!!!!!!!!!!!!!!!!; 24.02.2014

Maintenance of portacath: Hello, What are the recommendations for maintaining a portacath in order to keep its effectiveness? Are there any care practices to use between antibiotic cures? Thank you for your answers. Sincerely, a patient with cystic fibrosis.; 20.02.2014

Sport therapy in case of asthma and CF after i.v. cure: Dear ladies and gentlemen, how can I after an i.v. cure work-up again the FEV1, in case it has been decreased by half. I have allergic asthma and CF and exercise on the cross trainer, within 2 months I could raise now up to 2 x 10 minutes with 3 minutes pause in between. Does it make sense to exercise every day or only 3 times a week and do I also have success, if I raise the time and the watts (due to the Asthma) less? Many thanks for your help and best regards, S.; 20.02.2014

S. aureus colonization: Hello, in the last swabs of our son always S. aureus has been found. Symptoms of an infection are usually not present; for two weeks he is coughing without fever, without sputum and without that he is doing generally bad. He is not taking an antibiotic. First question: is it generally o.k. to desist from a general antibiotic therapy or prophylaxis, if there are no symptoms going along with a S. aureus colonization? Second question: If in case of a proven S. aureus colonization there is intermittend for a few weeks cough without sputum and without fever, is it then still o.k. to desist from an antibiotic drug? Third question: in case a waiver of an antibiotic drug is actually o.k., what would be reasons for an antibiotic therapy: fever? Bad general condition? Or in case of persistance of the cough over 2-3 weeks would one initiate an antibiotic therapy, even if otherwise no other symptoms are present? Many thanks for your efforts,; 17.02.2014