ecorn-cf: App. question list

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Pseudomonas colonization: Hello, Could you please define what is Pseudomonas colonization ? When Pseudomonas is observed for the first time in sputum sample, that it’s treated, that it’s disappeared for a long period, is it colonization ? Is it a primo-colonization? If Pseudomonas is not found in the following sputum samples, is the Pseudomoans always in the patient’s bronchi ?; 09.07.2012

pancreas: I just had the result of elastase in the stool : 461μg / g stool. Does it mean that I have a problem concerning the pancreas? M.; 03.07.2012

Bleach: Is the use of bleach allowed in institutes for children? (Institute of education for deficient children 12 to 20 years) What is its effect on urine?; 02.07.2012

CFTR mutation and CBAVD: My 18 year old son has been treated for a thyroid carcinoma. Before the treatment he had a sperm analysis. The conslusion was a diagnosis of azoospermia related to a congenital bilateral absence of vas deferens. So he underwent an analysis of CFTR gene mutation. A mild CFTR mutation was identified. He has to undergo a sweat test and a genetic counselling. I am worried. Can he be affected by cystic fibrosis? How does this disease progresses?; 02.07.2012

Hyperechogenic bowel: Dear expert team, I am in the 31th week of pregnancy and our baby has been diagnosed to have a mild hyperechogenic bowel. Furthermore, the bowel is slightly extended. The baby gains weight well (at the moment about 2000g) and all the other values are also good. How high is the probability that the baby suffers from CF? Many thanks!; 02.07.2012

What is the effect of Manuka-honey?: Is there any effect of Manuka-honey? I have read that some CF patients eat Manuka-honey...I have read this in connection with MRSA, according to another forum, the quite expensive honey is supposed to alleviate digestive problems. Could you say something about the possible mode of action? Is it possible that at least a part of it is true?; 02.07.2012

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