Topics

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
Tobramycin
Are there any adverse effects with inhalative Tobramycin? If yes, what are they? Thank you for your help
30.01.2017
House holidays with short carpet in room
For this summer, we will rent a holiday home. There is tile everywhere except in the rooms where there is short carpet. My wife having cystic fibrosis, should we take special precautions? Cordially
27.01.2017
Positve antibodies to Pseudomonas aeruginosa
My son, 14 years old, was diagnosed in August of being positive for antibodies (against Pseudomonas aeruginosa). Sputum has been always negative so far. He was treated with Ciprofloxacin and Colistine. When should we check the antibodies again? I am not sure what to do as I have received very different answers from the CF clinic. Does it make sense to control sputum resp. swabs monthly now? I am looking forward for your answer.
20.01.2017
Kefir
Hello I use Kefir to make a drink with gaz and rich by probiotics. Is there a bacterial risk to do it in the the kitchen and to drink it? Thank you
20.01.2017
RNA Therapy
Hello, There is gene therapy, protein therapy and now RNA Therapy. What is it about ? And above all, would positive results in RNA therapy address all patients (such as gene therapy) or would it depend on mutations (such as protein therapy)? Thank you in advance for your answer.
20.01.2017
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