ecorn-cf: App. question list

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Acute oesophageal pain: Hello, My daughter who is 14 often complains about severe pain of the lower esophagus that lasts a few minutes. The pain is sudden and without warning signs, its intensity is such that she can not breathe well as if she received a shot in the stomach. It lasts a few minutes. The occurrence of this fact is not stress-related. The Doctor who follows my daughter has prescribed two capsules of Omperazole®. The problem is that she is not serene anymore, she fears that the pain occurs at any time. I am expecting with all my heart a reply from you. Thank you.; 10.01.2012

physiotherapy for a 15 year old teenager: I would like to know which is the most effective and safe physiotherapy technique for a 15 year old boy with CF. I read somewhere that we must not perform clapping and shaking because they may cause pneumothorax or several other complications. Do breaths suffice? Which is your opinion about the vest?; 10.01.2012

nasal potential difference measurement: What tests can be done to determine the severity of the disease? Where it canbe performed measurement of nasal potential difference and what is the correlation between disease severity and this analysis?; 04.01.2012

Essential oils: Hello, we have just received an essential oil diffuser for Christmas. Our baby has cystic fibrosis, do you think we can use it. Could this be irritating?; 03.01.2012

Trip to India: Hello, I plan a trip to the North of India, to Rajasthan (delhi, agra and jaipur) from April 13th to 19th. My FEV1 is 60% of predicted. I would like to know: 1) if the climate, an estimated 25 to 33 °C, is neither too hot nor too dry during this period (tropical?) ? 2) which are the CF centres comparable to French CF reference centres in these cities and the names of the consultants ? 3) which vaccinations and which other preventive measures (malaria?) are recommended and possible in my case ? for example can I take an anti-malarial therapy if it is needed (I am taking chronic antibiotic therapy alternating ciprofloxacine, amoxycilline-clavulanate (for staphylococcus aureus infection) and itraconazole (for allergic broncho-pulmonary aspergillosis) ? Thanks for the time invested to answer my questions Best regards, M.; 03.01.2012

deltaF508 and R1070W study: Our child is compound heterozygous for deltaF508 and R1070W, with minimal clinical manifestations so far (pancreatic sufficiency, without pulmonary complications so far, only episodes of severe dehydration). We found a study (link attached) which refers to the 2 mutations, but I dont understand it very well. What would be the conclusions of the study? How can I determine genetically how serious will manifest the disease in our case, that 3M? Thank you. link: http://www.jbc.org/content/285/46/35825.full; 03.01.2012

polymorphism: Is there a relationship between the type of polymorphism detected in the patient and severity of cystic fibrosis? Our child has detected delta F508 heterozygous with 7T-9Tpolymorphisms and heterozygous R1070W. Thank you!; 02.01.2012

Number and types of caregivers in French CF Centers: Hello, Is there a national directive (or recommadation) which set out the minimal number of caregivers of the CF Centers according to the number of patients followed up? Where could I find the information about the medical staff of the 49 French CF Centers: number of patients and types of caregivers ? thanks in advance.; 02.01.2012

Lung Clearance Index: In witch hospital from abroad, could we do the lung clearance index for a child, 3 years old, with cystic fibrosis? We are interested in a hospital who receive private patients. Can you send me contact details? Thanks; 02.01.2012

ADHD: Do medicines for CF and the drug methylphenidate go together; 02.01.2012