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Topics
- pregnancy
- Can CF be diagnosed during pregnancy?
- 28.04.2011
- Salt intake in the diet
- Hello We add salt in the diet of our child to compensate for the loss of chloride ions (if I understood correctly) Are the recommended intakes exclusively NaCl (table salt) ? Or can one take the form of NaCl and KCl ? Questions arising in CF : is the organism lacking, in balance, or overdose with Na + or K + ?. Where can I find more information on these ion exchanges ? Is there any interest to take Cl while balancing the intake of Na + and K + in cystic fibrosis ? Thank you
- 28.04.2011
- Indoor plants
- Are indoor plants dangerous for my son, who suffers from CF? We are thinking about disposing of them. Could you give us advice, if we should rather dispense with indoor plants in the future? The indoor plants are only in the living-room, so not in the bedrooms. On this topic there are different opinions. Many thanks for your advice.
- 28.04.2011
- CF-arthropathy
- Dear expert team, how can a CF-arthropathy be diagnosed in children? My daughter is 9 years old with CF and suffers a lot under joint pain, needs a rehabilitation buggy in case of long distances. Many thanks
- 18.04.2011
- Weight after operation
- Dear expert team, the question about gaining weight after lung transplantation, I find it very interesting. Could it also be that after the operation the energy turnover increased? I have a similar problem. I had an operation of the abdomen (appendix), a bit more complicated, the operation took several hours. Since then I lost weight, nearly 1 kg every week. From yesterday to today I again lost 500g in spite of the fact that I eat all the time and take creon in high dosage. Here is my food from yesterday: 500 g white cheese 500 g youghurt 3.7% fat much fruit (apples, pears, mango, bananas) 6 pieces of cake (2x cream cake, 2 x nougat cake, 2 x cake with pudding) salad with 400g meat and dressing 3 eggs as stirred egg and fat to fry 300g cheese, 400g peas and a bottle of juice and half a bottle of milk. Many thanks for your answer
- 18.04.2011
- Bronchiectasis, bleeding
- Hello, I suffer from CF and also have bonchiectasis. I am 22 years old. I recently had an infection. I also have Pseudomonas aerugionsa. From the 10th january to the 23rd february I took antibiotics. During this time I coughed up also bood sometimes. Therefore I took for 8 days Dicynon® (Etamsylate) intravenously, after that orally 2 weeks Peflavit C® (Hypericum perforatum L.). I am at home for 3 days now. I feel really good, I only hardly cough. There are no hints at an infection. Nevertheless I have blood in the sputum. I take now Dicynon®(Etamsylate) orally for 3 days according to the opinion of the doctor. He can not explain why I bleed sometimes for one months now, in spite of the fact that I have taken those drugs???
- 15.04.2011
- Klebsiella pneumoniae
- My son is 7 month old now. The diagnosis has been made in November 2010 after a really severe phase with atelectasis and pneumonia. After that and until now he is doing obviously fine and he is even overweight. Since then we gave him prophylactically ampicillin and sulbactam. At the end of january Klebsiella bacteria have been found and the antibiotic has been changed to cefuroxim. Today the actual swab showed, that the Klebsiella bacteria have not been deminished, however even multiplied and 2 stems have been detected. Our center is of the opinion, that those germs are not "illness-relevant" but however they do insist on the antibiotic therapy. This was the sole information and my questions to the members of the center were obviously unwanted. It is very contradictory. According to the antibiogram, the germs should be sensitive to ampicillin and sulbactam as well as to cefuroxim, however the swab proves otherwise. The multiplication of those facultatively pathogenic germs is after all expected to make a pneumonia again more possible in case of further multiplication (alone due to the ammonia), especially if a virus joins in or the immune system is weakened due to the ongoning antibiotic therapy? Does one assume that those germs are not in the lungs and if yes, on what is that based on? Can one treat complementarily with Ribomunyl®? Many thanks in advance
- 14.04.2011
- NB-401
- I vaguely heard of NB-401. It is an aerosol that would combat bacterial strains highly resistant to current treatments. Could you tell me a little more? ongoing studies? Thanks a lot for your response
- 12.04.2011
- VX-661, for patient with the F508del mutation
- Regarding the phase II study of VX-661, for patient with the F508del mutation (deltaF508), which should begin during the second semester 2011: - Is it the same study than the one where VX-770 is used in combination with VX-809? Or is it a different study? - Is study is also specific for patients homozygous F508del? - Is there a website to know the inclusion criteria? Thanks for your response
- 12.04.2011
- Miglustat and VX-809
- Hello, What are the news regarding Miglustat ...Are you aware of new trials ? On the other hand, when will the results of the study on VX-809 be availbale ?
- 12.04.2011
