Topics

CF baby
Our baby (24 months old) is suffering from cystic fibrosis lung disaease for 2 years. Is there an organization that can help us to be treated in France? With our thanks in advance
02.03.2015
Early diagnostics
We know that our son (6 months old) has an increased risk for the illness of CF. A first screening test after birth did not show any hints for the disease and clinically he is up to now also totaly healthy. Now I want to know, if we should have a sweat test done nevertheless, to be able to start treatment if necessary as soon as possible? Many thanks!
02.03.2015
Warmwater bath days in the public swimming pool
Dear expert team, in an indoor swimming pool near our home there are so called warmwater bath days (the water temperature is at 31°C). Can my daughter (CF, 2 years old) take a bath there or is it like with the baby pools and jacuzzis and therefore has to be dehorted? If yes, this would unfortunately mean that she can not go swimming at all, as the "cold" pools are still too cold for her. Until now, she has been at the warmwater bath days two times and she loves it very much...Many thanks for your answer. Best regards, M.L.
02.03.2015
Mucus in the stool
Dear ladies and gentlemen, our son is now 13 weeks old. Since the second week that I stopped breast feeding, he has mucus in the stool. We have been in the hospital and have been discharged with the suspicion for cow's milk allergy and with a special milk. Abdominal pain, flatulence, diarrhoe and blood in the stool have disappeared since the beginning with Neocate® (highly hydrolized milk on amico acid basis), however the mucus in the stool, the reason we went to the pediatrician, stayed. He gains weight well. Birth weight 2700g, now with 13 weeks 5900g. Our midwife recommended to have him tested for CF. In the hospital and also at the pediatrician they do not want to hear anything about it. In the hospital they have told us, that they had nevertheless made a test for CF and measured the value for pancreatic elastase. This value was o.k. I know that this value is not a test for CF. Is the pancreatic elastase always decreased in children with CF or can it indeed be that this value is normal? He has no problems with his lung, has at the moment however a cold, has had however at any time a free lung. Can one say that in case of the symptom of mucus in the stool alone, one should initiate further tests for CF? I am very thankful for an answer!! Best regards A.G.
17.02.2015
Hyperinflation of the lung
Dear expert team, for month I (CF) have extreme problems with the hyperinflation of my lung (residual volume 280%), so that I am very handicapped. The hyperinflation occurs mostly in the afternoon, increases in my opinion if I inhale hypertonic NaCL, and does not disappear until I go to bed. Also physiotherapy aimed at deflation does nearly bring anything at all. If I do not inhale at all or only isotonic NaCL, I have the feeling, that I do not cough up enough. With Bronchitol® I have worries that the lung is not moistured enough. My CF physician leaves me unfortunately alone with the problem. Do you have a recommendation for me? Many thanks. Best regards
17.02.2015
Genetic analysis
Hello! After two sweat tests we know, that our daughter suffers from CF. Today we got the results of the genetic analysis of our daughter. She has the following mutations: c.1647T>G und c.1652G>A Can anybody tell me something about it? It is also written, that she is "compound heterozygous". Many thanks!
17.02.2015
Vertex and F508del and 1717-1GA in exon 11
Hello, I have got the F508del and 1717-1GA in exon 11. Do you know about the clinical trials for my mutation, is there any trail in progress? Best regards
12.02.2015
First time Burkholderia
My son, 37, has had for the first time Burkholderia multivorans 10^3 in the sputum. Besides Pseudomonas for decades. Does one observe this at first closely respectively is there any general procedure? He takes azithromycin and inhales every 4 weeks colistin respectively aztreonam alternating.
12.02.2015
Sputum Cytology Examination (SCE)
Hello, My little son, aged 5, had no sputum culture for several months. Indeed, during the last 3 controls in his CF center, no sample of sputum was possible (nothing back). If during the next visit no sample can be obtained, what is going to happen? How do we know that there is no colonization without SCE? The situation does not seem to worry carers ... which is different for me. Thank you in advance for your answer.
12.02.2015
Existing remedy
I heard that homeopathy "cad Crataegus" works pretty well: do you know something about that? Thank you.
12.02.2015
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