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Topics
- DMSO dimethyl sulfoxide in case of CF
- Acoording to Dr. Hartmut Fischer, DMSO is a channel opener and acts against scarring (CF?!). In the laboratory they are working on the chloride channels with DMSO. It keeps the chloride channel open. Does it make sense to use DMSO orally or transdermally in case of CF? Are there any studies about this? Many thanks
- 11.01.2016
- Physiotherapy and hygienic recommendations at school
- Hello, The chest physiotherapy will take place sometimes at school. Can you tell us the hygienic recommendations for a good chest physiotherapy? What kind of room is needed? Class room, meeting room... What recommendations are there for aeration or cleaning? Thank you Best regards
- 11.01.2016
- Hydrogen peroxide
- I have read, that 0.3% hydrogen peroxide could be helpful if used with a nebulizer in case of lung diseases. Furthermore it says that i.v. treatments in case of COPD/emphysema can stop the progress of the illness and partly even improve it. Are there any experiences in connection to CF? I could imagine that hydrogen peroxide could also have unfavoulrable effects as an oxidant...? Best regards, IE
- 03.01.2016
- fatty stool
- I have a 2.5 year-old son. Till his first year of life he was at 90th percentile of the weight-height curve, but now he is at the 50th. Last summer he had pneumonia for the first time and 2 months after diarrhea for 20 days that was treated with diet. Generally speaking he does not get sick easily. What worries me is that after the diarrhea his stool is fatty, it floats and it is smelly. Do you think that we need to get tested for CF?
- 22.12.2015
- Monozygote twin - CF testing
- Without any history of CF in our families, we decided for my husband to get tested for 89% of the CF mutations. Given the fact that he has a monozygote twin, who does not have children yet, we believe that, due to almost identical DNA, the genetic testing will cover him as well. Is this true? Can the CF mutations be influenced by environmental factors? The results were negative for any pathogenic mutations.
- 22.12.2015
- salty sweat
- I have a 14 month old boy who is still getting breastfeeding and has a diet rich in vegetables, fruits and meat. After reading about CF, I started gettting worried because his sweat is salty and he has persistent nose congestion. I wonder if these symptoms warrant a sweat test? When I kiss him on the head his sweat is salty and smelly, even though he may have had a bath two hours ago. How salty is salty? My sweat, for example, isn’t. Our paediatrician, who monitors him on a regular basis, has not detected any respiratory problems and has suggested aerius for the congestion to check if it is some kind of allergic rhinitis. The child is 82 cm tall and weighs 10.6 kgr. Thank you!
- 22.12.2015
- blurry sinuses
- Is it possible to have a negative CFTR sequence and totally negative sweat test (27 mmol/l). I am a 39 year old male. I have chronic sinusits for the last 4 years, especially during winter, spring and autumn. My vitamin D is rather low (26.8).
- 22.12.2015
- genetic testing
- I wish to have a second child. I was tested for 90% of the CF mutations and I was found to be heterozygote for c.443T>C. I do not carry any other mutations. Can I start trying to have a child, or must my husband get tested as well. There is no family history. Thank you!
- 22.12.2015
- Worsening of the prognosis because of Pseudomonas?
- Hello, what is the actual guidelinde in case of chronic colonizsation with Pseudomonas? Which role do the Pseudomonas antibodies play? Is it still like this that a chronic infection with Pseudomonas, that is treated according to the acutal guidelines, leads to a worsening of the prognosis/lung function? Many thanks that you take your time!
- 17.12.2015
- Physiotherapy differences worldwide and prognosis
- In the USA, CF patients are treated from the first year of life with a vibration vest, that should lead to a better coughing up of the mucus via mechanical support. In Germany this is not recommended. Why are the opinions so different? Are there any studies/data about the question if such a mechanical vibration leads to an improvement or to a worsening of the lung function? How is it justified here in our country, that those vests are not recommended? Are there any differences in the prognosis of CF patients in the USA and Germany?
- 17.12.2015
