Topics

normal school
We have learned after the discovery of significant bronchiectasis that our 8 year old son has cystic fibrosis. We find this news hard and I ask myself a lot of questions, especially if he can continue his schooling normally by knowing he eats in the canteen and stays at school after the normal classes to study until the evening every day, because we work both, his dad and myself. There are no drugs to take at lunch, only in the morning and evening. Thank you very much for your answer.
15.11.2012
Cave
Hello, Are there recommandations against visiting natural caves for children with cystic fibrosis? I think especially about the Pseudomonas aeruginosa germ. Otherwise what precautions should we take (wearing a mask) ... thank you
15.11.2012
Perfume (fragance) diffusers
Hello, Do you think that synthetic perfume (fragance) diffusers may be dangerous for lungs? Can we use them when our 2 years old girl is in the same location? Best regards. Thanks.
15.11.2012
Lung function
How to improve my child's lung functions (from 55% at present) and slow the further damage?
15.11.2012
VX Combo trial 770/809
Hello, how long will the combo trial phase III last? When will the results be presented? Thank you, Best regards,
15.11.2012
shake hands
I have Cystic Fibrosis. Is it better not to shake hands during the winter months (e.g. birthdays)? Will I get less sick that way?
15.11.2012
diagnosis
I have a question concerning my son, almost six years old. To me he looks healthy, he grows well and he has normal and regulars stool without noticing anything abnormal. During the winter months however, he has often been ill, although at present he is fine. Whenever he gets sick or tired he coughs a lot and we have been advised to treat him with salbutamol puffs. We have just been told that a niece was born with CF; the father of this niece is the nephew of my husband. (both sons of two sisters). My question is therefore: should I worry about my son having CF? Thanks for answering my question.
15.11.2012
Lung cilia
Hello Results of Brice Marcet (CNRS [National Center for scientific research], Sophia-Antipolis, France) concerning the identification of molecules that promote cilial growth of epithelial cells are good news but I imagine that we should be cautious before being too exited. However, could you tell me what will be the positive consequences if that’s indeed possible to make lung cilia grow again? Thanks for your answer
15.11.2012
Possibility for CF
Dr. Doudounakis, I am sorry to trouble you again, but I am writing you again and again because I am very worried. It is about the child that did the sweat test at Rio Hospital with the result of 59. I was told by the laboratory there that their reference values are higher (0-60 for normal) because they measure both sodium and clorium. Do you think I must be worried, given the fact that the genetic testing of the child for 95% of the CF mutations came up negative? We have tried at least 10 times to do another sweat test but the child does not sweat.
15.11.2012
Voice hoarseness
My child is 3 years old and suffers from CF. For a long time there is a hoarseness in his voice. Does it have anything to do with CF? I blame it on the Airway clearance therapy, or to the fact that he screams a lot. I would like your opinion.
15.11.2012
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