ecorn-cf: App. question list

Enter your username and password here in order to log in on the website:

Topics

School precautions: I would like some advice about what to do for our child when school starts. Thank you.; 02.07.2012

Aquarium and pseudomonas: (a)We have an aquarium at home. Does it impose a risk, as far as pseudomonas is concerned? Should I get rid of it, or can I take precautions? (b)What can I do, as far as cleaning the house is concerned, in order to limit the chances of my kid getting infected, at least at home? I would like to give me examples, not general advice. What must I use, where, how and when. (c)Except for pseudomonas (antibiotics), secretions (physiotherapy), nutrition (enzymes) what else do these kids suffer from?; 02.07.2012

Ambiguous sweat tests: My son (2.5 years old, twin b) due to low weight (he weighs 11.2 kg and is 86.5 cm tall) had 3 sweat tests: 3 October 2011: 1st test: 3/10, result=32 2nd test: 5/10, result=60. It was recommended to repeat the test another day. At the new appointment (29-11-2011) the results were: 2/10, result=50. It was recommended to do a genetic DNA test due to “low perspiration and ambiguous results”. How much do these values worry you? I should mention that apart from the “delay in growth” there were no other “suspect” symptoms found in the child.; 02.07.2012

G542X: Recently we were informed that the child I am about to give birth to will carry the mutations PG542X & C2183AA>G. Are these mutations grave? In average what is prognosis? Will the new drugs help my child? Is there some other way to help my child, other that physiotherapy and visiting the CF center? I am in my 5th month. What must I do?; 02.07.2012

Mutation: Hello, I am 35, I have been diagnosed since January 2010 (at 33 y.0.). I have always had stable respiratory problems (bronchiectasis). As I got worse in 2009, I was tested. I was found F508del/A1025D. I only have a rather stable respiratory disease (3-4 oral antibiotic courses a year because of MRSA), but severe fatigue prevents me from working. Do you know this association? Thank you for your response.; 25.06.2012

CF related diabetes (CFRD): Is there something a patient can do to prevent or slow down the onset of CFRD.; 25.06.2012

mutation: Hello, My 3 years old son has these 2 mutations: 1811+1.6kbA>G and G542X. What do you know about these mutations and their association? Thanks.; 25.06.2012

pools with demineralised saltwater: Hi we are going to a resort in turkey and they advertise that they are environmentally correct and don't use drinking water in their pools. the water in their pools are sea water which is demineralised (a bit of the salt is removed). its a newly restored hotel 4 star my concern is the safety of such pools using sea water we dont want pseudomonas in our daughters lungs again. J.; 25.06.2012

CF: What is the life expectancy of a baby diagnosed with CF in Canada?; 25.06.2012

information on the 2373del8 mutation: Hello, My son has 2 mutations: 2373del8 (c.2241_2248delGATACTGC) and F508del He is pancreatic insufficient but his tests and growth show that he correctly absorb the lipids. He doesn’t take any pancreatic enzyme. He does not have any gut disorder. Our CF center does not explain this particularity, could you tell me more about the first rare mutation (I don’t find any information on the database) ? Thank you for your answer; 25.06.2012