Topics

Vicks VapoRub®
My 3-year-old daughter suffers a little from congestion. She has an antibiotics and budesonide treatment. I wanted to know if products such as Vicks VapoRub® are banned or dangerous, as well as such as syrups, because her nocturnal cough wakes her and I would like to have a relief.
03.03.2016
Genetic testing
I am in the 17th week of pregnancy and I was tested for 92% of the CF mutations. I received an answer saying that no pathological mutations were detected, but just the following non pathological polymorphisms: 7Τ/7Τ,p.V470M, rs213950. What are the chances for the child to have CF, bearing in mind that my husband has not been tested. Thank you!
03.03.2016
Hyperechogenic bowel
I am in the 14th week of pregnancy and during a trophoblast test the fetus was tested positive for the DF508 CF mutation (heterozygote carrier). I and my husband have not been tested for any CF mutations. As far as I know there is no CF history in any of our families. I was informed by the laboratory that the fetus was checked for 53% of CF mutations and they recommend further testing. I was offered three options to test the fetus for 75%, 85% or 99% of the CF mutations. I would like to ask what are the chances for the fetus to have CF for each one of the offered options.
03.03.2016
Hyperechogenic bowel
My daughter is 29 years old and is pregnant for the first time. During her investigation in the 21st week of her pregnancy an hyperechogenic bowel was found in the fetus. The blood testing and the testing for Downs syndrome were normal. Can you tell me something about the possibility of CF?
03.03.2016
Inhalation of antibiotics during i.v. therapy
Hello, is it correct not to inhale antibiotics during an i.v. therapy (tobramycin and meropenem) in order not to damage too much the organs (kidneys etc.)? I am a bit sceptical, to inhale at least for 14 days only twice a day with hypertonic saline 6% and once a day with DNAse. I would be pleased about an answer, Best regards, A.
03.03.2016
Hygiene: the Nespresso coffee machines Nespresso, bacteria nests?
Hello, We have a Nespresso machine at home. We clean the reservoir every day and the capsules box regularly. Since the publication of typical articles below, my CF wife doesn't dare to take more coffee: Http: // bfmbusiness.bfmtv.com/entreprise/les-ma chines-a-cafe-nespresso-des-nids-a-bact eries-933592.html [article in French] Furthermore, in the hygiene brochure published by the French CF Association, it's advisable to dry the dishes with towels changed every day and washed in 90 °. In coffee shops or restaurants, it should not always be the case: which precautions are necessary to take when we have to take a drink or a meal in a coffee or a restaurant? Thank you
27.02.2016
Lupus and CF
Dear team, I came across the article “Lupus and CF – Quensyl?” on this platform. I have been diagnosed to suffer from CF and also from Lupus erythematosus. I tolerate Quensyl very well and it has an effect, so that I have to take additionally cortisone only in phases. My question: is it known to you, if the combination of CF and lupus is more frequent or is there even a predisposition? At time the diagnosis had been made in 2011 one could not give me any information about this. Many thanks and best regards!
27.02.2016
Electromyostimulation training (EMS)
Dear ladies and gentlemen, Is it sensible for CF patients to do in addition to an endurance training an electromyostimulation training (EMS)? I got this hint because of my problems with my spinal discs (I suffer from CF, have problems in the cervical and lumbal spine as well as rheuma). Many thanks for your answer!
27.02.2016
Enterobacter chloacae and Serratia marcescenz and S. liquefaciens
Dear expert team, I suffer from CF and I am Pseudomonas negative and have again and again the above mentioned germs in the sputum. Where can one get those bacteria from, they are intestinal germs, aren’t they? The FEV1 value is stable, however I cough more and have difficulties in bringing up the secretions. Inhalations of tobramycin is the current therapeutical regimen of my CF center. Since the occurrence of those germs (about 6 months ago for the first time, then again and again), I feel exhausted and have aching arms and legs. Is the inhalation of tobramycin sufficient and if yes, why can those germs still be detected under the therapy with tobramycin? This seems to be a poof, that there is no efficacy? Many thanks for your efforts!
27.02.2016
3849+10 kb c / 5T
Hello, can you tell me the phenotype of the mutation 3849 + 10 kb c facing the variant T5 please. Thank you in advance. Best regards
27.02.2016
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