Topics

Influenza vaccination
Hello I have a 3y little boy with cystic fibrosis who must be vaccinated against influenza. He has a runny nose right now. Can he be vaccinated despite that? Thank you for your answer. Best regards
28.01.2016
Inhalation devices for CF patients
Is there a good alternative for the e-flow®? We inhale three times a day (two times Mucoclear® 6% and one time Pulmozyme® and realize with the e-flow® a rapid decrease of the inhalation power. With a new nebulizer, an inhalation of one ampoule takes only about 6 minutes, however after some time (2-3 weeks) the inhalate comes out more and more less concentrated, and the inhalation of one ampoule takes markedly longer. The inhalation is then markedly less effective, the mucus losens much lesser. And this in spite of the recommended clearance by Pari® with the easycare device and even with regular clearance with Kukident®-solution. This short life duration of the nebulizer is going on our nerves. Are there any other devices for CF that could be recommended? Many thanks for your experience!
28.01.2016
State of research
Dear expert team, I am interested, if there are already any studies, that report how may people with CF are in Germany that have been diagnosed late. I mean here at adult age and especially older than 40 years. Many thanks in advance and best regards, E. [name removed from Ecorn-CF]
28.01.2016
Child in foster care
Hello, my granddaughter is placed in a foster home following a court ruling for ill-treatment. I would like to know the percentage of CF children is placed in foster homes and having a normal life nonetheless. Best regards
28.01.2016
Human genetics
Hello, I, my husband and my daughter have been investigated for Del F 508 , Del I 507, Del TA 1677 , Del 21 kb. In my husband and my daughter (4 yrs) Del F508 have been found, nothing has been found in me. How does this influence the prognosis and further therapy? How necessary and sensible is it, that I and my daughter get investigated for further Del mutations? Many thanks!
28.01.2016
Acinetobacter
My daughter (15-years-old) is colonized with Staph. for at least 2 years. Now, 4 months ago, an infection with Acinetobacter baumanii (multiresistant MRGN 3) and lately an infection with Haemophilus influenzae occurred additionally. Her FEV1 value lost 35% in 3 months. Now Acinetobacter is not detectable in the sputum anymore. Would you in spite of this recommend an i.v. therapy, if yes for which period of time?
28.01.2016
Running dehorted
Hello, my son (25,CF) has been told from his CF center, running would not be the best sport for CF patients - as the pelvic diaphragm would be overloaded, as it would already be exposed to a high burden because of coughing. Otherwise on hears however about the success for the lung function of CF patiens, who started running and even do marathon? Many thanks for your answer!
25.01.2016
Another question on antibodies
[These question refers to the question "antibodies"] Dear Dr. Hügel! Referring to your answer on the question "antibodies" I have another question: if respective antibodies against Pseudomonas can be detected and however no Pseudomonas can be found with the usual investigation methods (throat swab, sputum, induced sputum) - would an anti-Pseudomonas therapy (e.g. an oral or inhalative treatment) be initiated in spite of this according to the guidelines? An the second question would be: can antibodies be investigated for any germ and probably can one conclude from the amount of the antibodies which germ plays the first role respecitvely causes the problems? In advance many thanks for your answer I.D.
25.01.2016
Child with immunosuppressive therapy in the same class
Hello, my daughter is 7-years-old and suffers from CF. At the moment she has a Pseudomonas. In her class, there is a child suffering from an autoimmune hepatitis and is under immunosuppressive therapy. I am worrying that the other child might probably acquire germs faster, that might be a risk for my daughther and of course the risk the other way round, that the Pseudomonas could be a risk for the other boy. Would it make sense to seperate the children, so that one goes to another class?? Furthermore I am worrying that the teachter underestimates the illness of CF and cannot handle it. Many thanks for your opinion.
25.01.2016
Complementary drugs for pseudomonas
Hi, my daughter is 7 years old and since the beginning of the year we are fighting against Pseudomonas. Actually we are for the second time for iv antibiotics in hospital. My question is, are there any additional options in complementary medicine? Is there any experience in treatment with Manuka honey, curcuma, cysticus…or what else helps?? Is there anything you can recommend in addition to drug therapy? Thank you for your comments.
25.01.2016
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