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Topics
- Throat swab in the nurses’ room???
- Dear expert team, Last time at our CF clinic, Louis was weighed and measured at the nurses’ station – okay – but the nurse also did a throat swab there without first disinfecting her hands, which shocked me very much. The new CF journal made me panic even more now. Is something like this normal, or does it only happen in our CF clinic? We have been having our problems there anyway, because we have been begging for a statement and they keep putting us off. Regards, Michelle
- 06.09.2010
- R553x/IVS8-5T-TG12 mutations
- Hello, my 5-year-old daughter was diagnosed with cystic fibrosis two weeks ago. Sweat test was negative, but the paediatrician ordered a gene test, which showed that she has the R553x/IVS8-5T-TG12 mutations. This is supposed to be an atypical cystic fibrosis. What does that mean, and how does this influence the progression? In addition, my daughter was diagnosed with Alpha 1-antitrypsin deficiency four weeks ago. Two weeks after that, the same laboratory diagnosed the rare genetic type MM. – This means she is healthy. After that came the CF diagnosis, again from the same laboratory. My daughter rarely is phlegmy, only when she has an infection. She does not have any digestive problems or failure to thrive. She is 115 cm tall and weighs 19.5 kg. Should we inquire further? Can this diagnosis really be true? Many thanks. Kind regards. C.M.
- 06.09.2010
- Pseudomonas stutzeri in the nose
- Dear expert team, Pseudomonas stutzeri was detected sparely in our daughter’s nose. What kind of treatment of this germ, when proven in the nose, do you suggest. Best regards
- 06.09.2010
- PTC 124
- Is it true that PTC 124 is effective with class 1 mutations? That is, with the cftr dele2,3 mutation? Thanks
- 06.09.2010
- Permanent braces: connection to PSA colonization?
- Dear expert team, I am writing about a girl with CF who is wearing permanent braces. There is a film visible on the braces, particularly where they are fixed to the teeth. The girl admits that she is not spending enough time on cleaning because it is tedious. She has a high amount of PSA in her sputum. My question now is as follows: Is there a connection between insufficient oral hygiene and the extent of PSA colonization? This is also a matter of making it clear to the persons concerned what the effects of insufficient oral hygiene can be. In the case of sustained bad oral hygiene, should the braces be removed as an alternative if this would be justifiable from a dentistry perspective (cost-benefit analysis)? Many thanks for your answer! Kind regards
- 24.08.2010
- Cayston® (Aztreonam lysine)
- Hello CF team, [Germany related part of the question about the availability] How is the treatment with the inhalative antbiotic drug Cayston® (Aztreonam lysine)? 1st month: Colistin 2nd month: Tobi® (tobramycine) 3rd month: Aztreonam lysine and then start again from the beginning? Many thanks.
- 23.06.2010
- Planning our holidays
- Hello, Last year we were at the North Sea. (…) This bring me to my question… This year we are planning to spend our holidays in Austria, but we are not sure about where exactly we should go. We are wondering if we should chose an accommodation directly at a swimming lake or on a mountain pasture (alp; in German: “Alm”)? What about Pseudomonas and swimming in a lake? Is it better to avoid lakes (I am referring only to lakes with 1a water quality of course) completely and prefer chlorinated pools instead? Or is this nothing we have to worry about? Natural lake, barrier lake or swimming in a river? Maybe you could help us to take a decision! Many thanks.
- 23.06.2010
- Handicraft class
- Dear team, my son would like to take a handicraft class (manual/creative work) as a compulsory optional subject in school. I worry about problems with the clay (and also with the clay cutter in the craft room) as well as with glue, varnishes, and dust. He has repeatedly been battling pseudomonas, aspergillus, Burkholderia cepacia and inquillinus! Many thanks for your swift answer.
- 23.06.2010
- Scuba diving and CF
- Dear expert team, I am 30 years old and have CF, although with good lung function and hardly any problems with my disease. In the summer I would like to take a scuba diving course. My girlfriend thinks it might be dangerous because I would have to rent a breathing machine. How do you evaluate this problem? Is this really dangerous due to an infection? Do you see any problems with scuba diving in general? Many thanks.
- 23.06.2010
- Intestinal problems with CF
- What are options and experiences regarding examination and diagnostics in case of repeated abdominal colics and assumed constipation, intestinal stenosis up to the point of quasi-obstruction of the bowels in individuals with CF? […] Wouldn’t it make sense for adult CF patients to have a colonoscopy on a regular basis? Thank you for your advice. Kind regards
- 23.06.2010
