ecorn-cf: App. question list

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Sleep apnea?: For a long time (several years) I "buzz" when I fall asleep or while I am sleeping. It deals with a kind of groaning noise, when I am woken up I often remember to have just had some talks in my dreams. Until now I thought this was due to the lively dreaming, however I have come across the sleep apnea while googling the symptoms. As it is when googling symptoms, I also recognize myself in some others of the mentioned ones. Is there a known correlation between CF (I am CF patient) and sleep apnea? Adenoids are only slightly present, the tonsils however are present and very large.; 26.11.2013

pseudomonas treatment: Dear ECORN Experts, I have a 5 years daughter. Here where I live we do not have a cf specialist so we go to another country for controls. She was diagnosed with cf at 1 one month. Her sputum test came back positive for PA (Pseudomonas aeruginosa) for the first time on January this year. We started therapy oral ciprofloxacin 4 weeks and inhaled colistin untill she had three negative sputum tests. Since the results were negative we stopped inhaling colistin, but in July the sputum test was again positive. We did oral cipro for 6 weeks and again started inhaling colistin. Then in September it was again positive and now she will be on oral cipro for 3 months and continue inhaling colistin. Our dr told us that she has to be on inhaled colistine for all her life. I was reading another treatments and I see that sometimes the I.v. therapy is recommended. Do you think that we should maybe try I.V. therapy before deciding to put her on lifelong colistin, because we are buying it and it is becoming very hard for us? thank you in advance; 26.11.2013

Diagnosis? Addition!: My grandson has the following result of the genetic tetsing: heterozygous TG10/TG12 and heterozygous for the 5T variant IVS8:TG12-5T/TG10-7T in the poly pyrimidin-tract. We have been told that a CF could be excluded to 90%. However, what about the meconium plug at the beginning and then about the 3 weeks of ileus? The little one has been 2 months old yesterday and is again in the hospital. Do you advise us to go to a specialized clinic? Stool release is still a bit difficult. It has become a bit better after Kreon®. The pancreatic elastase has been tested 4 times and was normal all the times, as well as 3 sweat tests have been normal. Can a CF now be excluded? Thank you very much.; 20.11.2013

Usage of Sinupret®: Dear ladies and gentlemen, the company Bionorica advertises its preparation Sinupret® (here especially Sinupret extract®) that it positively influences the CFTR-channels of the airway mucosa in healthy people suffering from an acute or also chronic rhinossinusitis. Namely in the way that the mucociliary clearance would improve because of liquefaction of the viscous brine phase on the inflammed mucosa. What is the situation like in CF patients? Can somebody who has e.g. a reduced numer or a reduced acitivty of these channels profit from a long-term intake of Sinupret® (my pharmacist assumed this)? Is there any experience on this? Thank you for your answer and best regards; 20.11.2013

Appointments at the CF-center: which controls should be done?: Hello! Our child (7 years, CF, underweight) has an appointment at the CF-center every 3 months. Auscultation of the lung is always done and a swab is taken (according to the infection even more often), once a year the blood is controlled. After first infection with Pseudomonas with i.v. therapy and tobramycin inhalation our child is PA negative again and in a stable health condition. Aspergillus antibodies have been detected in the blood, as well as again and again Staph. aureus in the swab. My sorrows and question is now, if we probably miss something if no lung function measurment or thorax x-ray is performed, respecitvely which investigations have to be done regularly in order to get everything? Many thanks.; 18.11.2013

Mild cystic fibrosis: What is the incidence of a mild cystic fibrosis? Is the prognosis for survival concerned? What is the future? (My daughter is 8 years old).; 18.11.2013

Mild form: Hello, my 8-year-old daughter was diagnosed to be heterozygous for the Delta F508 and heterozygous for the complex allele TG12 T5. Which evolution, which prognosis for the future can be expected, knowing that she already has respiratory (asthma) and digestive (flatulencies, constipations) problems. Thank you.; 18.11.2013

Nasal spray influenza vaccination: Dear expert team, last year, at this site, it was advised against the nasal spray influenza vaccination for CF patients. On the website of the German patient organization Muko.ev it is recommended this year, that it would even have a better effect. Are there any new findings concerning this kind of flu vaccination? I am insecure! Thanks! [Supplement of ECORN-CF: On request we got the following additional information from the questioner: "Hello. It deals in general with CF children between 2 and 17 years, this questions arose on an internet forum with involved parents. Thank you!" End of the supplement]; 18.11.2013

Drugs/vaccination during pregnancy: Dear team, I am 30 years old, suffer from CF (DeltaF508), have a very good lung condition (FEV1 115%), in exchange I have an insulin-dependent diabetes mellitus. Now I got to know yesterday, that I am pregnant in the 5th week (absolute desired child, husband is not a CF-carrier). Now I want to know: I take acetylcysteine 600, ipratropium bromide for inhalation, salbutamol for inhalation, acetylcysteine for inhalation as well as basal insulin and insulin lispro, unfortunately at the moment also 10mg prednisolon, as for about 5 days my bronchi are a bit "closed". Am I allowed to take all those drugs without any problems? I stopped mannitol for inhalation. As now the autumn is coming and I am working at an ENT-doctor's office, I actually planned to get a flu shot. Does this make sense, respectively from which week of pregnancy on this would be o.k.? Many thanks for your efforts CM; 18.11.2013

Antibiotics in chicken - nutritional recommendation: Dear editors, one reads again and again in the press that chicken (and also turkey) are filled up with antibiotics. As we as CF patients are indeed dependent on antibiotics in a special way, the following question comes to my mind: are CF patients allowed to eat chicken etc. at all, as they certainly evoke massive resistances in humans/ in us? Many greetings, T.; 18.11.2013