Topics

Therapeutic education
Hello I am a nurse and I am in training to become a pediatric nurse. I would like to make my project work of the end of studies on therapeutic education for parents and young cystic fibrosis patient. During my research, I realize that only the "coordinator nurse" or the CF therapeutic education specialised nurse realizes that education. The pediatric nurse or the day hospital nurse does not? Should I do training in more than the diploma in nursery? Thank you
12.02.2015
Burkholderia
Appeared for the first time in the sputum - where did I get it from?
12.02.2015
Increased antibody titre
Hello, how do you judge the following antibody values: EXO: 1:1241 AP: - ELA: - In the swab, Pseudomonas could never be detected until now. Many thanks and best regards,
12.02.2015
Meaning of germs
Dear expert team, our daughter (5-years old) has CF and until now she is doing well. We just had again the big annual investigation at our center (lung function 106%). The result of the throat swab was the following: Moraxella catarrahlis Klebsiella oxytoca Staph. aureus In parallel to the opinion of our center I would like to get a second opinion. What is the meaning of those germs? How can one avoid those as possible? Way of therapy? Longterm effects? At the moment, no therapy is done because there is no infection. How do you judge the colonization with Staph. aureus? Until now, we only took antibiotics during an infection. Many thanks for your opinion.
07.02.2015
Really always 6% NaCl in children?
Hello, we have a 6-year-old daughter (CF) with a very mild pulmonary course. For about 3 years she inhales 3% NaCl (and 4 drops salbutamol), before this 0,9% NaCl. The center now recommends that our daughter inhales in the future with 6% NaCl (plus 5 drops of salbutamol). Is this reallly necessary? Or does it not make sense to moisture the airways with 3% NaCl, especially as our daughter has few secretions and to use 6% NaCl in times of infection? Recently our daughter has inhaled because of an infection only with 6% NaCl, she coughs with this very, very strong and she says often, that she has an urge to gag. Is this intended? I have contact to some adult CF patients and I know, that they often do only inhale with 0,9% or max. with 3% NaCl. I am very happy about your appreciated opinion. Many thanks.
07.02.2015
Severe asthma or yet again something else?
Dear expert, I suffer from severe asthma. Every three months I get a severe asthma attack. Even inbetween, I have permanent cough, much sputum and problems to breathe. I have very many infections and every year at least two pneumonias. One could already speak about "permanent antibiotic therapy". Now Pseudomonas has been found in my sputum already several times. My physician said it would probably be a chronic colonizaton. What does this mean? I thought "chronic colonizations" would only occur in case of cystic fibrosis? Is Pseudomonas not a germ specific for CF? My asthma medications are fluticason+salmeterol, montelukast, prednisolon 5 mg, aclidinium bromide. My physician is of the opinion, I should do a CF test at a center. However, I am 32-years old, at that age no CF is diagnosed, isn't it? Something has to be done, because the many infections weaken me and worsen the lung function all the time. Is it common, that asthma has such a severe course or should it really be something else? I inhale daily salbutamol via a nebulizer and I can breathe better with this and can cough up the mucus. Best regards,
07.02.2015
Artilysin® by the company Lysando AG
Dear ladies and gentlemen, are the published results from the company Lysando AG indeed as promising concerning the eradication of resistant germs with the drug Artilysin®, respectively probably is already the usage forseeable? Especially Artilysin 175 ® against Pseudomonas. Many thanks
07.02.2015
After surgery
Hello, my father will soon have a cardiac surgery. I would like to know if there is a risk for him if my son comes to see him at hospital after surgery (my cystic fibrosis son, 3 years old, has had no bacteria on throat swabs for a long time). If yes, for how long there is a risk ? Thank you
30.01.2015
Organ donor
Can the mother or father of a CF child be a donor if transplant is required or does the fact to be a healthy carrier excludes that possibility ? Thank you
30.01.2015
cysteamine and epigallocatechin gallate
Hello Our 9 months old daughter suffers from cystic fibrosis (homozygous for F508del mutation), and I read an article the month before regarding a potential treatment for cystic fibrosis by the use of cysteamine associated with epigallocatechin gallate (EGCG), which should have positive effects on the disease. These two drugs are already on the market, which would imply that the developmental costs are less than for news drugs. Do you have more information on this treatment and on positive effects for patients suffering from CF? Are clinical trials planned to know if it’s an effective treatment against CF? In advance, thank you for all information you brought us regularly.
30.01.2015
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