ecorn-cf: App. question list

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cystic fibrosis - problems with medical care: Hello, We have a 5-year-old daughter suffering from CF. Our child is in the care of only one doctor, who is taking care of all CF patients in our province. In the past two weeks we tried to contact our doctor, but unfortunately her mobile phone is switched off. Our daughter underwent antibiotic therapy, but unfortunately since that time she has a dry persistent cough that often leads to vomiting. We called the doctor's office trying to make an appointment and we insisted on admitting our daughter. Finally we got the referral to perform pharyngeal swab. The results revealed the presence of single Pseudomonas aeruginosa colonies and Staphylococcus MSSA. Pseudomonas is sensitive to colistin and Staphylococcus to methicillin. After receiving these results we tried to contact our doctor again, but her mobile phone is still switched off and it is not possible to make an appointment in the doctor's office. We don't know what to do. We are all alone and have no doctor's care and our daughter is sick. She suffers also from abdominal pain and steatorrhea, which she doesn'c control. We are asking fro help, because we don't know to do.; 20.01.2009

Cough: My child has mild cough during the day, night and during execise despite he is after antibiotic course recently.Is it normal?; 20.01.2009

ileostoma: I am from Kosovo.I have a daughter with CF 5 months old. She was born with MI (mekonium ileus) and had her first surgery at two days old,and had ileostoma. Second surgery was done after 4 months but there where some complications so she was operated two more times,So she had three surgeries within ten days,and now she has again ileostoma but not at the end of the small intestine. Now she is 5 months,she takes all the therpy for CF(enzymes,antibiotic,adek-s,donperidon....)but she is dehidrating too much.Someone suggested me the refeeds into the stoma,but our doctor still didn't mentioned it. So what do you think for refeeds? I am interested to go somewhere abroad for the next surgery,but I don't know where to go.; 19.01.2009

School attendance: I have a 9-year-old daughter with atypical CF, but who is so sick that I have taught her at home for two years now. The school does not know how to deal with her, and in the end they approved individual education for her. I'm worried about how long I can manage to teach her, and whether we don't have a right to such things as benefits for care or possibly some assistance for a teacher. The school told me that I would have to pay for this myself, and if an expert physician did not call for home care again, then I cannot bring myself to imagine what would happen. I'm alone with two children. Thank you, M.; 19.01.2009

CF and Aspergillus: Hello. I'm the mother of a 30-year-old daughter diagnosed with CF. I wanted to ask about treatments for aspergillus infections. Aspergillus is minimally sensitive to Itraconazole. Last year the aspergillus went away after a 14-day treatment with voriconazole – we've been without aspergillus for 9 months. We know that voriconazole is a very expensive medicine. Our doctor confirmed that the medication cannot be prescribed because of its price. Please advise us on whether the medicine can be approved by a reviewing doctor or something similar. My daughter is colonised by staphylococcus aureus; she does not have either pseudomonas aeruginosa or Burkholderia cepacia. I am convinced that some form of assistance exists. Thanks in advance for your advice and best wishes for continued success. Vera Sefrova; 19.01.2009

Nebulizer: Good evening, I have two nieces with CF, and we would like to know if there is a sterilizer available for inhalators and other aids. My sister boils them and dries them with a hair dryer. Thank you; 19.01.2009

CF – initial diagnosis during adulthood – sweat test: Hello Expert Team, how reliable are sweat tests for a diagnosis during adulthood? Should it be taken several times if the first result was in the gray area (with this particular machine: 88 – positive; result – 68). Thank you very much in advance for your help. Regards, simmy; 15.01.2009

Forest kindergarten: Dear Expert Team, our little daughter (13 months) is a CF patient. She mainly has digestive problems (two intestinal obstructions already). So far, she has not had any severe infections and her lung is clear. Nevertheless, she inhales saline solution twice a day. We are now considering enrolling her in a forest kindergarten. On the one hand, we were thinking of the lots of exercise outdoors; on the other hand we thought that the children might not contract infections from each other so easily. However, we are not quite sure whether there might be an increased risk of germs in the forest. From your point of view, would there be any concerns about a forest kindergarten? Many thanks for your answer.; 15.01.2009

Blood sugar check after meals as well?: Dear Expert Team, my doctor told me to check my blood sugar, and I have been doing that for three days now. Is it sufficient if I do that before breakfast, lunch, and dinner, or do I have to check after all my meals as well? Many thanks, leomax; 15.01.2009

Information on PTC-124: Hello, I have read with great interest the question of a father of two CF children in Austria. In this question, the study drug PTC124 was mentioned. Could you please provide more information on this interesting medication and scientific approach? My daughter (28yr) suffers from CF, which was shown to be caused by a homozygous deltaF508 mutation. Thank you for your answer, E. Böger; 15.01.2009