Topics

Genetics, healthy carrier information
Hello, I ask myself this question: is it possible to know with the guthrie test if a baby is a healthy carrier of a gene causing later cystic fibrosis for his children and in this case if the families are warned. Thank you for your reply. Best regards.
14.02.2017
Posterior rhinorrhea
Hello I have heard that in CF the posterior rhinorrhea is frequent. Why is it posterior and not flowing through the nose? Are the secretions purulent or on the contrary clear? What are the symptoms for a baby? Cordially
14.02.2017
Mild forms
Hello, I am the mother of a 8-month-old little boy with cystic fibrosis. It is said that he has a mild form of the disease ( f508-r347h ) without pancreatic insufficiency for now. He has no other symptom than a loss of salt. His disease took time to be detected because the low level of sweat chloride (31), was almost normal. I am very worried for the future. I can’t have any straight answer when I ask the CF center about his disease evolution neither the symptoms' appearance. I am told that everything is possible, from a simple infertility, to an evolution towards a classic form of the disease. When can we say that the disease will indeed be mild (what does mild mean) and his life expectancy will it be the same than that for a classic form? Thank you for your answer!
06.02.2017
Mutations
Hello Could you give me some information about the mutations F508delta and S466X. I know that some touch more organs than others. Thank you
06.02.2017
How long taking antibiotics?
Hello, first of all thank you very much for this expert forum. It is a great help! If an antibiotic therapy with cefuroxim has been intiated in CF child that had initially a viral infection that has been superinfected by bacteria (Moraxella catarrhalis, H. influenza) and the symptoms (rhinitis, subfebrile temperatures, reduced general state) have disappeared after one week, and the status is good again, only a slight residual cough remained, can the antibiotic therapy be finished soon? Or is there a reason, to continue the therapy for 3 weeks? With every day, the selection advantage for resistances or problematic germs is growing, isn't it? Should one therefore not limit the antibiotic therapy to "end of symptoms + a few days" instead of giving just at the beginning an overall duration of 3 weeks, even if the infection was over after one week? Many thanks again for your time!
06.02.2017
Development worker in Senegal
Dear expert team, your son is 22 years old, is studying away from home and thinks about doing a voluntary service for half a year (March to August 2017) in Senegal in Tambacounda via the organistaion "circle of friends Tambacounda Hannover". The accomodation is very simple (no running water, earth closet, no possibility to inhale Pulmozyme, nearest simple "hospital" 370 km away, -...) Our son needs Kreon and inhales with Pulmozyme. His health status is stable (normal weight, relatively normal lung function, no Pseuomonas, e.g. he is playing table tennis). Last year he had an allergic shock, the reason for it still remains unclear. 3 years ago he had an operation of nasal polypes. The tonsils have been removed 2 years ago after an abscess. During the last 3 years he has been treated 2-3 times sucessfully with antibiotics because of an infection. Is it accepatable from the medical standpoint that he does this voluntary? If yes, could you give us recommendations and advice for this? If no, which arguments could we give to our son? If you need further information, please turn to us. We thank you for your efforts and hope to get an answer, soon.
06.02.2017
Vibration vest
Hello, why is in Germany the vest not recommended, as it is in the USA an absolute standard? The vibrations are obviously much stronger and longer as one could do it "by hand"... Why there are no scientific studies on this topic? If there is such an essential difference between the recommended physiotherapy in Europe and USA, it must be possible, to analyse scientifically which way is the better one: with the vest or without? It would be very important to be able to give evidence based recommendations, not only "out of a feeling" or "because of tradition". For example: Are lung function parameters different in comparable age categories in USA and in Germany? What is the average age at listing for lung transplantation due to CF in USA and in Germany? Many thanks for your time and efforts.
06.02.2017
To empty out the dishwasher/ washing machine
Hello, our daughter is nearly one year old. 3 months ago, we got the diagnosis CF deltaF508. At the moment, she likes to help in the household very much. This includes to emtpy out the washing machine and especially to empty out the dishwasher. Is she allowed to help or are there too many germs? Many thanks for your answer.
06.02.2017
Operation indication for hypertrophic adenoids
Dear expert team, my daughter is 21 months old and suffers from CF. For a few weeks she has an impaired breathing through the nose and because of this especially at night after the bottle cough attacks until she has to vomit. Therefore, she had last week a flexible endoscopy at the ENT specialist. There, hypertrohic adenoids until to the choanae were diagnosed. Furthermore, she has small effusions in the middle-ear. She now receives a steriod (cortisone) nasal spray and should undergo an operation. However, the symptoms disappeared by now totally (after the second day of cortisone nasal spray she had free nasal breathing and no cough/vomiting anymore). Therefore we ask ourselves, if it is really necessary to have the operation done and what would be the consequences if we should not have done the operation. The ENT specialist is of the opinion, that enlarged adenoids due to the underlying disease of CF should be operated generoulsy. I would be very thankful for your opinion, in order to discuss the topic then with our CF team.
06.02.2017
Mutations TG12T5 and 1601F (or I1601F)
Hello, I have just learnt that I carry these two mutations and I would have liked to know more about them. Thanks to all those who can enlighten me.
30.01.2017
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