Topics

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
Pneumonias
Dear expert, I suffer from severe asthma which has proven to be almost completely resistant to therapy. The only thing that brings relief are high oral dosages of cortisone. Lung function is permanently limited. I have about three pneumonias per year in addition to several other infections. One could almost speak of a “long-term antibiotics therapy.” There has been repeated evidence of Pseudomonas in my sputum. I have often been given Ciprofloxacin during the infections, but also i.v. antibiotics. The lung specialists in the lung clinic think that this is most likely a chronic colonization. Does this mean that one keeps the bacteria in the lung forever? And are they responsible for the infections? Last week I did a sweat test and came out at 50. This means it is inconclusive, right? Could the test be wrong? I am 20 years old and CF is usually not diagnosed at that age after all, is it? Can one have severe asthma (I often end up in the hospital due to attacks) and CF? Is there a big difference at all in my case? My asthma is progressing and lung function deteriorates from each series of infections to the next. I regularly inhale salbutamol via Pariboy®, since I have severe shortness of breath and can get rid of the sputum more easily this way. I am particularly tight in the mornings. Therefore, my everyday life is characterized by inhalation and breathing therapy anyway. I was suggested to inhale antibiotics permanently and to see whether the frequency of infections, particularly of pneumonias, would decline with that. Which of the two is more harmful – oral antibiotics every four to six weeks or long-term anbitiotics inhalation? The doctors think the progression of my asthma is unusually severe. Over the past four years, my lung function has deteriorated rapidly due to the pneumonias. Kind regards.
23.06.2010
Wind instrument
Our 5 year old child would like to learn a wind instrument. Is it good or bad for a CF patient to play a wind instrument with regards to the pressure on the lungs, etc.? And would it be better to use a plastic flute instead of a wooden flute since wood does not dry that quickly with regard to the danger of Pseudomonas? Thank you for your answer!
23.06.2010
Current research of gene therapy
Hello, I would like to know how the current state of research of gene therapy in the field of cystic fibrosis is? What are the prognoses for the future, especially for newly diagnosed babies? And if other countries are “more advanced” in comparison to Germany? Many thanks for your answer.
23.06.2010
CF in Asian countries
My child has lung problems that seem like CF. After screening for 34 mutations he seems to have one common CF mutation. Specific tests to look for other mutations and a nasal potential measurement are ongoing. Her father comes from Indonesia and I wonder whether Asian people carry other mutations than Dutch people? And are there types of CF that are more prevalent in Indonesia compared to here?
16.06.2010
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