ecorn-cf: App. question list

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liquid soap: Hello, Our CF center recommends the use of liquid soap for washing hands of the family and physiotherapists at home for our daughter. When charging distributors, there is always a non-used product stagnating at the bottom. Could the properties of the soap be altered? Could the risk of contamination by the possible development of germs or bacteria be dangerous? Do you have any recommendations to inform us about best practices? With many thanks for your help and availability.; 11.11.2013

cf: I have a 4 year and 9 months old daughter. She is coughing several times a day, especially in the first part of the day. She was diagnosed with asthma 2 years ago and does not respond well to the treatment. The sweat test and the value of the test was 55mmol/L and 57mmol/L. Is it possible for her to have Cystic fibrosis?; 06.11.2013

sweat test: Hello, If the value of the sweat test is 55mmol/L- 57mmol/L, is it possible that the child is a CF carrier without developing the disease?; 06.11.2013

cystic fibrosis: My daughter made a sweat test and had a test result of 61mmol/L, is it possible for her to have Cystic fibrosis? Thank you; 06.11.2013

cystic fibrosis: Hello, my name is Loredana, and I have a wonderful child who has very often problems with the lungs and bronchi. We’ve made several investigations, including sweat test, and the result was 54mmol/L. In every hospital we went they gave us antibiotics like erythromycin and Salbutamol nebulization, but the diagnosis every time was obstructive bronchitis. My question is: do I have to worry that my child has CF? Is it necessary to make other tests?; 06.11.2013

State of research?: Dear expert team, How far advanced is the current state of research on VX809 really? Is there a chance for this drug to be released to the market this year (2013)? And is it correct that it is only applicable to the Delta F508 homozygous mutation – and only to patients in very bad general condition? (Which, if it were the case, one could not understand as a patient.) What happened to Ataluren® – the results were insufficient – and so there is currently nothing in the pipeline for the R1162X stop mutation? This means that the only drug currently on the market is Kalydeco® for the G551D mutation. Which is great! I do think it is awesome that medicine has seen such major breakthroughs despite everything – but I am also worried – time is running out, particularly if one has two different mutations Delta F508/R1162X. Many thanks for your answer.; 04.11.2013

Borderline sweat test results/genetic testing: Hello, I am a woman of English descent living in Finland and my family has a history of cystic fibrosis. I have a history of nasal polyps, recurrent pancreatitis, recurrent sinus infections and intestinal ileus. I also have a fatty liver and pancreas divisum. My gallbladder was removed because of sludge in 2001. I had recurrent bronchitis and pneumonia as a child, but my respiratory symptoms have since disappeared. I discussed the possibility of atypical cystic fibrosis with a doctor in Finland, and she reluctantly allowed me to take a sweat test. The result was 44, which they consider completely normal here in Finland (anything under 60 here is normal, and only results over 80 are considered affirmative). They refuse to do any genetic testing. Is it possible to travel to another country for genetic testing? Thank you.; 04.11.2013

ABPA – very severe course of disease: Our daughter (eight years old, CF) contracted ABPA out of the blue in September, with a very severe course of disease. Previously (over the past twelve months), there had been repeated instances of slightly increased IgE levels around 300, but that did not seem alarming). She shows the known symptoms within a few days and then, within 48 hours, has acute dyspnoea, very strongly pronounced soft tissue emphysema, among other things bilateral pneumothorax, and finally the inevitable intubation. Upon being admitted to the hospital, her IgE levels were at 320 and rose to more than 3000 within two weeks at the hospital, whereupon ABPA was diagnosed. She has been treated with cortisone for one week. The last blood sample, just one week after beginning treatment, showed that the value increased even during cortisone therapy (50mg daily), namely to almost 4000. Is this a typical course of ABPA? Wouldn’t our daughter additionally need an antifungal drug? Being laypersons, we are very worried that the fungus actually has a walk-over with the current therapy (antibiotic and cortisone). Blood sugar is elevated, but currently still at a range where insulin should not be necessary. Many thanks for your quick answer.; 04.11.2013

Diagnosis?: My grandson’s gene test yielded the following result: Heterozygous TG10/TG12 and heterozygous for the 5T variant IVS8:TG12-5T/TG10-7T in the pyrimidine tract. We were told there is a 90% chance that cystic fibrosis can be ruled out. But what about the meconium plug at birth and then the ileus at three weeks? The little one turned two months yesterday and is now back in the hospital. Would you advise us to present to a specialized clinic? His defecation is still difficult, although it has improved a bit after taking Creon®. Kind regards and many thanks your effort.; 04.11.2013