ecorn-cf: App. question list

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Homeopathic tinctures: Dear expert team! I give my daughter (16 years old, CF) again and again the Marian thistle tincture from the company Sagrusan (www.sagrusan.at), according to the motto "if it does not help it can at least not harm!" Now, however, I am not sure anymore, as those tinctures, like nearly all homeopathic tinctures, are conserved with alcohol? For me, it does then not make sense to produce such "drugs" for protection of the liver at all, as those would surely be also harmful for non-CF patients, who want to do something for the liver for other reasons? Actually I have chosen this method instead of the capsules from the Marian thistle, as one says, that they contain barely any active agents anymore. I would like to hear your opinion about this. Thank you and best regards,; 19.05.2014

When to tell a child about having CF: When should the child be informed about having CF? Is it better at a young age, when the child cannot ask many serious questions? I am afraid of the Internet. Are there stages in informing? Do I tell everything? One thing is certain, they realise something is wrong at a very young age, even if the hospitalization is not frequent.; 19.05.2014

borderline IRT test: I have an 8 months old baby girl that weighs 8.8 Kg and is 73 cm tall. The first IRT test at the maternity ward was borderline (126), the second one at 21 days of life negative (52). We have visited a gastronenterologist when she was 3 months old because her stools had blood and mucus. We were told she was allergic to milk and prescribed us a special kind of milk. Due to her good growth the doctors exclude the possibility of CF. She had once a mild bronchiolitis when she was 7.5 months old and was treated at home. The parents have not been genetically tested, we intend to do so when we gather the money. I am worried though. We have not done a sweat test, because the family environment does not consider it necessary since the paediatrician has not recommended it and they think I am obsessed. Does jaundice affect the IRT results and could it be the reason we had a borderline test the first time? Is it necessary for the baby not to gain much weight for a CF diagnosis? Thank you!; 19.05.2014

Enzymes: I have two daughters, aged 3 and 1,5 years. They both have CF. The little one has not gained any weight for the last 3 months and weighs 11 kg. I have increased the creon following her doctors’ recommendations but to no avail. What is going on? Thank you.; 19.05.2014

Mild CF mutation: I was tested for CF at Horemion Laboratory [Greece] and came up positive for a very mild mutation, which is considered neutral without pathological consequences. The geneticians, as well as my gyneocologist, told me not to worry and that it was not necessary for my husband to get tested because, even if he was positive for a severe mutation, the child would not have any problems, since the mutation traced in me is without pathological symptoms. What is your opinion?; 19.05.2014

3 months of cough: I have a 4-year-old daughter who has for the last three months a cough that sounds as if she has stuck secretions, mostly during the night when she goes to sleep (not during the night especially), but a little during the morning as well when she wakes up. In the meantime she coughs rarely. She was given Mucosolvan® for 5 days 1 month ago. Afterwards the doctor recommended antibiotics for 10 days (amoxicillin). The last couple of days we give her seretide®(fluticasone and salmeterol)-singulair, but the cough persists for the last three days, she has a running nose and she coughs regularly. The only time she had fever was 2 months ago for 2-3 days. Her weight and height are at the maximal normal values of the charts. Her sweat is salty, but not anything especially so, as I read about it in CF. Her stools have a normal weight and picture. She has energy and drive from 7.30 in the morning till 9 o’ clock at night (she does not sleep in the afternoons). This persistent cough drives me crazy. What do you think I should do? The paediatrician has exluded CF, but I do not believe her.; 14.05.2014

Air-exhausting systems, what has to be paid attention to: Dear expert team, I move with my daughter (CF, 18 months old) to an appartment, where the bathroom has no window: there is an air-exhausting system (which one exactly, I do unfortunately not know). I have already looked for adequate former questions on the ecorn-cf site, however I could not make really sense of it. Is it true, that the air-exhausting system needs a fungus respectively a bacterial filter? I have read that there should not be a container for condensating water where it quasi recirculates - reportedly the exhausted air is blown to the outside...please give me some feedback, what I have to pay attention to! Many thanks, best regards, M.L.; 14.05.2014

Families with several CF people: Hello Are there families with several people with cystic fibrosis ? Thank you; 14.05.2014

Sweat test in CF: Hello, we have only in May an appointment for a sweat test. Our son (6 months) has cough since his 5th week of life and wheezing. He weighs 9000 g. With such a weight, is there CF possible at all? Many thanks in advance.; 14.05.2014