Topics

Stay in public places
Hello, I am the mother of a 6 years old CF child and I would like to know if it is risky (bacterian infections) to bring him at Disney during the christmas holidays, while it is very crowdy. Thank you.
11.01.2011
NPD and gut biopsy
Is it possible that a person has CF despite a normal gut biopsy and a normal NPD?
11.01.2011
Aspergillus and lawn
Hello! I read that grass clipping should be limited to avoid spread of Aspergillus in air and that mowing the lawn should be avoided in the presence of someone with cystic fibrosis. Does this mean that we should prevent children with cystic fibrosis to play in the grass? Thank you for your reply.
11.01.2011
Droplet size (mass median diameter/MMD) in eFlow and Pari Boy SX
Hello, for 0,9% sodium chloride (aq), the data sheets for eFlow and Pari Boy SX specify (with the same measuring method) an MDD of 3.9µm for the eFlow, 2.9µm for the Boy SX with blue nozzle insert in the LC Sprint nebulizer, and 2.2µm for the red one. Earlier, I was supposed to nebulize Tobi® (tobramycin) and sodium chloride with the blue LC Plus (now Sprint) nebulizer, and Pulmozyme® (dornase alfa) with the red LC Star (now SprintStar) due to the smaller droplet size. Now I was prescribed an eFlow for Colistin. The manufacturer recommends both LC Star or LC Plus, but says that LC Star should be preferred. In my clinic, I was told I could also nebulize dornase alfa and sodium chloride 0.9% with the eFlow. It seems somewhat of a contradiction to me if I was supposed to nebulize dornase alfa at a droplet size of 2.2µm earlier and now (according to the manufacturer) it is possible to reach a size of 3.9µm with the eFlow. Can I inhale sodium chloride and dornase alfa with the eFlow without hesitation (FEV1 1.54)? Thanks and kind regards.
11.01.2011
Is pregnancy possible with cystic fibrosis ?
I'm 28 years-old and I would libe to become mother but I have cystic fibrosis. I know that each case is unique but I would like to know the general recommandations to start a pregnancy with cystic fibrosis : cut-off value of respiratory function and... What are the precautions to take for pregnancy? And what are the recommandations after birth. We have already performed genetic counselling for my husband and he is not carrying mutation. thank you.
11.01.2011
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
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