Topics

appetite
Recommend medicine appetite for my grandson with CF and no appetite Thanks
11.01.2011
Petition for Help
In Bulgaria we have a laboratory to measure the levels of fat-soluble vitamins! What to do?
11.01.2011
CF testing
I am a 29 year old female who has been struggling with severe weight loss, elevated liver enzymes, bowel issues, etc. Never had any issues with lungs, but due to unexplained GI symptoms and improvement with how I am feeling on pancreatic enzymes, mild CF has been brought up to be tested for. I had the sweat test done and values were only 21, but they only collected 15 uL of sweat and were concerned test needed repeated. My question is, does the test need repeated so that a more sufficient amount of sweat can be collected? Thank you.
11.01.2011
Abdominal pains/mesenteric lymphadenitis?
Dear members of the team, I have a girl (nine years old) diagnosed at the age of 9 months with cystic fibrosis. My daughter has a mild pulmonary disease and pancreatic insufficiency. She receives a "standard" treatment for cystic fibrosis (mucolytic agents, pancreatic enzymes, vitamins and antibiotics when needed). In the last week my daughter complained of abdominal pains, especially in the right lower abdomen region. She had no fever, nausea, vomiting, diarrhea or respiratory infection in the last month. There were two ultrasounds performed and my daughter was consulted by three pediatricians and surgeons. Ultrasound showed that liver, pancreas, gallbladder, kidney, appendix were normal. There were found just few enlarged lymphnodes on the mesenter. Coprological examination and Giardia antigen - negative. Other investigations were not performed. Doctors established the diagosis of mesenteric lymphadenitis and they prescribed only a symptomatic treatment (Trimebutine maleate, Drotaverinum, Ibuprofen). But these medications are not helpful. My daughter still has abdominal pain, especially in the evening and during the night. Because I am not confident that the correct diagnosis was established, I would like to ask you what other investigation I could do in order to establish with certainty the diagnosis. If the diagnosis will be confirmed, I would like to ask if this prescribed symptomatic treatment is correct and sufficient. As I said, after a week my daughter still has strong abdominal pains. May antibiotics be helpful in this case? Thank you.
11.01.2011
Q493X
My daughter has just had Q493 identified as her second mutation. (She also has D508) Can you tell me anything about Q493 as it seems fairly rare?
11.01.2011
CFTR protein
What is the route of production of CFTR protein until it’s arrival at destination?
11.01.2011
Trampoline use
Hello, Is the use of trampoline of interest in a child having chest physiotherapy? For expectoration, for example. Thanks for your attention. Regards.
11.01.2011
Health problems
Hello, My daughter was diagnosed with cystic fibrosis in january at the age of 8 years. My problem is that she complains of headaches, sleep disturbances and belly ache every evening and the pulmonologist tells me that it has nothing to do with CF. I am worried; can these problems be related to her disease, and can I change doctor, because she did not reassure me especially since it is new for me and I do not have to undergo her unfriendly remarks!
11.01.2011
about tobramycine
What has to be done for a CF patient to receive treatment with aerosolised tobramycin ? I know that the treatment is expensive and is not given to all CF patients.Thank you for the answer!
11.01.2011
Food in case of repeated intestinal obstruction
Hello, my daughter has cystic fibrosis and often presents with intestinal obstruction. What should I feed her with to prevent these episodes? Thank you
10.01.2011
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