Topics

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
new inhalative treatment
Hello my daughter's doctor told her that a new aerosol would be placed on the market in early 2012. Can you tell me a little more? Is it an antibiotic, a mucolytic, ..... Thank you in advance for your reply.
02.01.2012
advanced research
hello, I wanted to find out the research against cystic fibrosis, which projects could emerge soon? and then at what stage is gene therapy? thank you
02.01.2012
How do we get rid of MRSA?
Our daughter, one year old, CF, has been MRSA positive on and off (sometimes negative, but immediately after positive again) since a hospital stay about six months ago. My husband and I are MRSA negative. When my daughter was initially colonized, she was diagnosed with MRSA-induced pneumonia. This was treated with a strong antibiotic, which did help to get rid of the pneumonia, but not the MRSA. When she was admitted again later, this time with bronchitis, the doctors again attempted to tackle the MRSA with antibiotics. Unfortunately, this did not last very long. We have been at home for some time now (a good three months now) and were told that she would hopefully get rid of the germ here through her immune system. Unfortunately, this is still not the case. What is your advice? What else can we do? Of course, I am doing a lot of disinfecting in the house; everybody always disinfects their hands anyway. The laundry, etc. as well. Are there only i.v. antibiotics therapies, or also oral drugs that one could at least try? In my opinion, it gets more difficult to get rid of the germ the longer one has had it. Therefore it is very important to me to keep battling it. We would very much like to go to a medical rehabilitation clinic at the end of next year to learn a bit more about the disease, to make the food more palatable to my daughter, etc. Is there any chance at all? Is it possible for a germ to disappear just like that, after a year or so, without doing anything about it? I am at a loss! Unfortunately, our CF clinic somehow is not doing anything in this direction anymore.
02.01.2012
Nails
What is so special about the nails of children with CF? In one of the first contacts with our doctor he checked the nails of our baby son, but we forgot to ask him what’s so special about nails in CF.
02.01.2012
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