ecorn-cf: App. question list

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CF worse in the winter?: Dear expert team, My son has a severe cough (including bringing up mucus) which starts in September and lasts until the end of April. From May until August, he does have a cough as well, but not as severe. He also has chronic polypoid pansinusitis, which we are able to manage quite well with cortisone-containing nasal spray during the summer months but which unfortunately keeps returning. We have been having these phases since he is two years old. I can practically set my watch by them. My question now: are there cases in which this disease is worse in the winter? Many thanks.; 23.11.2010

Complementary inhalation of bicarbonate and thiocyanate in addition to the normal inhalation with Sodium Chloride: Dear ladies and gentlemen, our little son is 18 months old and has been diagnosed as a CF child 6 weeks ago. Of course, we as parents are constantly reflecting how we could further develop or improve the therapy of our child. As an employee of a university I have online-access on many scientific medical data pools and journals. I have to admit, that I am looking to these very often.... Many a time I have read that the CFTR gates in addition to chloride ions also bicarbonate and thiocyanate (and lately: hyaluronic acid). The effects of this on a defective CFTR are discussed. So, the absence of bicarbonate is expected to impede the folding of the mucines in the lung as well as the absence of thiocyanate is expected to weaken the immune-system of the lung, as hypothiocyanate as a "mild" oxidant is not produced anymore. I ask myself for quite a time, why the daily inhalation with iso- or hypertonic saline is not completed with these salts, in order to achieve a therapeutic effect? Finally the normal saline inhalation is not more than "only" the complementation of something that is missing. The GSH-inhalation would for me also aim in the direction of this approach... Are there any attempts in this direction respectively are there any planned? I would be very thankful for an answer. Yours sincerely,; 22.11.2010

RhDNase: Side effects of Pulmozyme : is there another drug to replace it ?; 22.11.2010

Aerosol: Dear madam, sir, Our 13 months old daughter suffers from CF. Luckily she has little airway complaints and only uses vitamins and creon pancreatic enzyme replacement therapy. Our doctor wants us to start using nebulizer. She does not complain of shortness of breath, nor anything that points towards it. The doctor advises us to use an aerosol with salt water, not antibiotics and states it is more preventive. No I am asking if she is not too young to start therapy with a nebulizer because she doesn’t have any airway disease, nor secretions. And secondly I am worried about the effect of the nebulisation. Isn’t it so that the use of salt solutions increases the sodium chloride content on the mucosal surface and inhibits the natural immune system (defensines). Thank you for your reaction.; 22.11.2010

Haemoptysis - numbness: Good evening! I am 23 years old and suffer from CF with df508 mutation. I have many bronchectasies and since some time ago I cough out blood every day, even in small quantities in my sputum, or on its own. The last 1,5 year something strange came up. Sometimes I cough, I have haemoptysis, even a little, and then my whole body goes numb and I feel paralyzed for 15 minutes. I do not lose consciousness, I am diabetic, but my glucose levels were normal during the “seizure”. My oxygen was down!. In general, my oxygen varies from 92-96%. Can someone tell me what may the cause of all this and how it can be treated? What kind of testing is available? My head MRI was clean.; 18.11.2010

allergy: Is allergy to Aspergillus frequently associated to CF ? Is there a link with the presence of Aspergillus in sputum ? Thanks for your response; 18.11.2010

Achromobacter xylosoxidans: Dear Expert Team, Is there any news in 2010 concerning the therapy options of the above mentioned bacterium wiht patients showing severe decrease in FEV1 (and otherwise only faily treatable Staphylococci in the sputum? Many thanks for your efforts.; 18.11.2010

Lung transplant: If a patient undergoes lung transplant do these lungs stay clear of CF? Or is there in the long term also building up of sticky secretions?; 15.11.2010

Infertile: I have two sons. We recently found out that they both have a mild form of CF. They have never been ill. My eldest son wanted children and now it seems as if he doesn’t have semen in his body. Also operatively it was impossible to obtain sperm cells. He will thus never have a child of his own. In the other son there is also no living sperm cells in his ejaculate. At present he doesn’t have a steady relationship and there has been no further testing because that would be very invasive. He had surgery several times because he had an accident. Is the chance that he is totally infertile equal for him or can’t you state it like that?; 15.11.2010