Topics

Actinomyces odontolyticus
Hello, the above mentioned germ has been found in the sputum, the throat swab was free of it. Should a treatment be initiated? Best regards,
11.05.2018
Inhalation of 6% NaCl solution with eflow rapid
Hello, The CF center told me, that they would not prescribe the eflow rapid nebulizer for our daughter, as it would not be suitable for the inhalation with 6% NaCl solution. In the product leaflet however, it says that 6% NaCl can be inhaled with the eflow, only the membrane has to be well cared for: immediately rinsing, two times a week backwash, after each inhalation disinfection. What do you think? Best regards,
11.05.2018
Salt substitution in case of babies
Dear experts, in how far the loss of salt in case of babies or toddler with CF should be covered by increased salt intake and how can the additional salt be given to babies? Many thanks....
11.05.2018
Dog after transplantation in bed?
Hello, can our dog sleep in our bed after lung transplantation? Which would be the risk, because fungi, bacteria etc. are already spread all over the appartment as the dog lives there... Many thanks
11.05.2018
DF508 mutation and mutation of unknown significance
I am 22 weeks pregnant in my second child. I was to be a carrier of the DF508 mutation, while my husband carries the c3118c>T (L1040f) mutation, of unknown clinical significance. We were not tested when we had our first child, and the geneticians advised us to test our firstborn, who was found to carry both mutations. His clinical picture is excellent, as is his growth. In 2.5 years he has suffered only one bronchiolitis and episodes of laryngitis, without high fever. His sweat test is 47. We were advised not to do an amniocentesis, since, based on the picture of our child, even if the fetus carries both mutations, the symptoms will be very mild. 1) Can the symptoms in the future become severe? 2) Since it is a boy, is sterility a given? 3) What does a borderline sweat test mean? Is it not positive? Thank you!
04.05.2018
c81c mutation
My wife is 21 weeks pregnant. She was tested and found a carrier of the DF508 mutation. I was tested as well and I was found to carry the c81c>T mutation. My wife had an amniocentesis. The fetus was found to carry the DF508 mutation and we await the results for my mutation. What are the chances for the baby?
09.03.2018
Stem cells from cord blood?
Hello, our first child suffers from CF, and we are expecting our second child (healthy carrier). One reads again and again about advertisment for freezing of cord blood after birth. Do you see a potentially advantage in the (far) future of cord blood respectively cord blood stem cells of a healthy baby concerning the illness of CF of the sibling? Many thanks for your answer!
05.03.2018
Inhalation of Biklin® (amikacin)
Dear expert team, as I have mycobacterium abscessus in my lungs, my CF center has recommended to inhale 1-2- times daily amikacin for 3 months. Do you know, if amikacin can be inhaled with the e-flow? I have some other questions: At the beginng of 2016 I had problems to see and strong vertigo, it was suspected that this were side effects of tobramycin that I inhaled at that time for more than 2 months. After finishing tobramycin, those side effects disappeard after about 3 months. Amikacin is as tobramycin member of the aminoglycosid family. Do you have knowlegde about side effects of amikacin concerning vertigo and visus problems? Would you therefore dehort the inhalation with amikacin? Many thanks
05.03.2018
Nucleoitc change of unknown significance
I am 16 weeks pregnant and I was tested for 99% of CF mutations for purely preventive reasons, as there is no history of CF in my family, or in my husband’s family. The results showed the nucleotic change c.1001G>A (.Arg334Gin) in the CFTR gene in heterozygote condition and that there are not enough data from the literature concerning its pathogenic significance. What does this mean exactly? Am I a carrier of the CF gene? The recommendation was for my husband to get tested for the 99% of CF mutations. The results will come out in a month? What are the possible scenarios, if he is found to carry a mutation? Thank you!
09.02.2018
possibility for CF
I am a mother of two children. My second child has a persistent wheezing. We have had a full respiratory examination, an Xray and we did a sweat test with a result of 19.2. The first testing of the sputum reported pseudomonas, but not the second one. We were advised to have a genetic testing for CF. I was tested for df508 in my first pregnancy with negative results. Do you think my child has CF?
09.02.2018
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