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Topics
- Do you treat children too?
- Do you treat children too?
- 06.09.2010
- Nausea and vomiting in severly ill people
- Despite 24-hour oxygen administration, my son suffers from nausea and vomiting in connection with food intake. This often seems to be the case in the late stages of CF. Is there a connection with the lung/heart problem (tachycardia) or a medicinal therapy? It would be important for him to gain weight given the upcoming transplantation. His diabetes is adjusted quite well and the oxygen saturation okay.
- 06.09.2010
- MRSA
- Dear expert team, I have a tremendous problem. Our little Louis is almost 19 months old now and has CF. My partner’s family does not want to have anything to do with the disease, dismiss everything and think that if they only see him every three months they do not have to pay attention to anything (we live in the same street). My partner’s grandmother has diabetes, can hardly walk and has recently been admitted to three different hospitals including a lung clinic due to acute disturbed functions. I am terrified now that she might have MRSA, and I do not know what to do. We avoid any contact completely now, of course. How could we find out whether grandma has such a germ? What are we supposed to do now? Please answer me honestly; we are done with this family anyway, but how long does such a germ live? Regards Michelle
- 06.09.2010
- Hygiene
- Hello, I have a question concerning hygiene with CF children. Some think that it is necessary to have the child shower and change all of the clothes. I usually do this every other day. Would it not be an exaggeration to do this more frequently? My daughter is five years old, has two rabbits and a dog, and I pay strict attention to her washing her hands whenever she was in contact with the pets. After she goes riding, she always changes all her clothes immediately. In addition, I always put any clothes into the dryer after washing to get rid of any germs. Earlier, I often only folded them… Sometimes I wonder if it would not be reasonable to keep folding the clothes without putting them in the dryer or ironing them. Which hygiene measures are necessary, which ones are exaggerated?!? Many thanks.
- 06.09.2010
- Food
- Dear expert team, I have read all questions in this forum and, interestingly, have come across the question about chees. Up to now, I have not given Louis any blue cheese for fear of possible fungi. This has been clarified now. ;-) Are there any other foods which one does not think of at this point, but which people with CF should perhaps rather not eat? This is concerning “strange” fungi or other “CF-specific” germs. And food intolerances notwithstanding, of course. Many thanks Michelle
- 06.09.2010
- 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
