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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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Topics
- Outdoor swimming pool
- Hello, our daughter (16 months old and CF patient in a stable health condition) loves water and taking a bath. Since the diagnosis has been made, we have not visited an indoor-/outdoor swimming pool because of the possible danger of Pseudomonas. We would not go to bathing lakes as well as indoor swimming pools with her in the future, either. In contrast, we are open against the bathing in the sea and already two holidays on the sea shore were unproblematic. What do you think about visiting an outdoor swimming pool with your experience? In this case it would deal only about the sole bathing. Showers and sanitary devices would be tabu. I assume that a big pool would be more recommendable as a children's pool. We are aware of the fact that we have to take the decision ourselves, but probably you could help us with the estimation of the risk? Many thanks for your efforts!
- 08.06.2011
- Sanitation of the surroundings in case of MRSA
- Is there any informational material (beyond the recommendation "disinfection of hands, clothes, bedclothes and daily washing of towels") for paretns of little children, e.g. in the form of check lists, how they can sanitate the home sourroundings after occurrence of MRSA in order to avoid a reinfection? I think there are pacifiers, tooth brushes, cuddly toys, doorhandles etc. to take into account and probably other things one does not think about as a lay person. Our CF center has nothing to contribute here. Thanks!
- 08.06.2011
- How high is the risk of CF-pregnancy?
- I am pregnant and the 3rd child of the cousin of my husband has now CF (both children before have also the gene but are not ill). I am now very afraid that my child has that, too. What can I do? My first child has nothing and in our family there is nothing known about disability or inheritable diseases. Can one do a test to me or to my husband if one of us also carries the gene (I thought that we both have to have it in order to bequest it) as I do not want to have an amniocentesis done unnecessarily. How can one test it? Thanks,
- 08.06.2011
- cystic fibrosis-sweat test
- I have a 9 year old daughter with diarrhea since birth, the genetic test was negative for 29 mutations, but the symptoms and the sweat test was 68 NaCl, 58 and the lowest value 48 NaCl. How many registered patients have a positive genetic test? My daughter also has respiratory tract infection with Staphylococcus aureus for 3 years, adenoidectomy and viscous secretions of the noose and stool. What should I do?
- 07.06.2011
- question
- Hello! My name is Golita Nicoleta and I live in Galati. My daughter is 15 month old and after chronic diarrhea she took a sweat test and the value of the test was 48 mmol/l. After 2 weeks we went to another center where we repeated this test and the result was 64 mmol/l. Because she was symptomatic (stool after every meal, repeated colds, salted skin) she was diagnosed with CF and she received medication: Kreon 2cps/day (morning and evening); do these enzymes must be administrated at every meal? Pulmozyme – in the morning; Ursofalk- half cps/day (TGO-26, TGP-36). Do all patients with CF receive Pulmozyme or only the ones with pulmonary affection? I mention that my daughter never did a pulmonary X-ray.
- 07.06.2011
- Portaneb nr 2
- Thanks for your information about the PortaNeb nebulizer. My 13 years old son is going to travel and the question is about the nebulizer he has to bring with him for inhaling colimycine and RhDNase : should he take with him his e-Flow nebulizer which requires disinfection or the disposable Sidestream, usually recommended with bronchodilators ? Is Sidestream as performant than e-Flow for antibiotics and RhDNase (there is some doubt for my pulmonologist) ? Thanks.
- 07.06.2011
- ASPERGILLUS
- Hello, There are several Aspergillus: fumigatus, niger, flavus ... Are some of them more dreadful than others? In case of contamination, is antibiotic treatment systematic? Thank you.
- 07.06.2011
- antibiotics
- Hello, My daughter whose 18 month old child was diagnosed with CF at birth, has the impression that doctors routinely give antibiotics without sputum culture. Practitioners criticize each other, we even heard a "if you want". Knowing that having a sick child greatly fragilizes her, it's not up to her ... Could you inform and reassure her. She is concerned that unnecessary treatments today could limit the possibilities for later treatment. Thank you for your response.
- 07.06.2011
- Heat and damp cloth
- Hello. It is very hot and to lower the temperature, I used to wet a towel and dry it on a chair in the living room. Is it dangerous for my baby of 6 months? Does she risk infection with p. aeruginoa ?
- 07.06.2011
- Haemophilus
- My daughter, 2.5 years old with CF, got her first bacteria, Haemophilus, which has just being treated by antibiotics for 2 weeks. What about this bacteria? Is it dangerous? Is it possible to get it playing in sand on the beach? Thank you
- 30.05.2011
