Topics

Breast-feeding
Hello, I would like to know why some CF centers do not encourage the breast feeding of the CF babies and propose systematically an enriched milk, while we know the benefits of the maternal milk?
17.09.2014
Kreon® dosage
Dear experts, I have a 4 year and 9 months-old boy diagnosed last year in October 2012 with cystic fibrosis, after he had two sweat tests, the first with the value 98 and the second 58. The sweat test was done because the child had chronic diarrhea for about a year. As a treatment we currently have 25000 Kreon® and capsules are taken at main lunches, Pulmozyme® and TOBI® because he had in March Staphylococcus aureus in the culture. Can you please tell me if a side effect of TOBI® can be diarrhea, because since he started to take TOBI® (3 weeks ago), the child has diarrhea. We need to know how to take Kreon because of the child's diarrhea, it's difficult as the child eats more a dietary food regimen than normal diet, he is not eating milk products because he is allergic to cow's milk protein and doesn’t have gluten intolerance because he was tested for celiac disease and the test was negative, stool and fecal was also negative. Now the child is 104cm tall and weighs 17kg. Thank you.
17.09.2014
SOFTENER
We have a daugther with cystic fibrosis and we would like your opinion on this new softener made with the help of the CNRS.
15.09.2014
Magnesia
Hello my 6 year-old daugther with cystic fibrosis is registered in a gymnastic club where they use magnesia. There is silca in magnesia, is it dangerous for her lungs?
15.09.2014
Treated with Kalydeco®. And then?
Hello, patients receiving a treatment like Kalydeco®, do they have a different life? I mean by that, do they still need to take many drugs such as Creon®, do they still do a lot of physiotherapy? Or it is case by case? Is there an increase in life expectancy, but is their life a little more pleasant? Can we hope to have a change in life for our adolescent, if one day searchers find a molecule for the rare mutations? Thank for your reply. Best regards. Mum of a 14 year-old adolescent.
15.09.2014
cystic fibrosis
My daughter suffers from cystic fibrosis, she claims that her doctor forbids her contacts with dogs and fish. She refuses to come home. We have a dog (poodle) very clean. She will not trust us with her children under the same pretext. I think this is really an excuse to avoid us !!!
15.09.2014
Vertex - results of a phase 2 study for patients heterozygous for F508del
Hello The Vertex company has published results regarding patients heterozygous for the F508del mutation, here is the link: http://investors.vrtx.com/releasedetail.cfm?releaseid=862727. It seems to me that patients heterozygous for the F508del mutation could have a potential treatment like the one received by patients carrying two copies of the F508del mutation. This is correct? Could they be included in clinical trials? Thank for your reply. Regards.
15.09.2014
ISET method
Hello I have already read, with attention, the last answer regarding the subject [http://ecorn-cf.eu/index.php?id=65&L=8&tx_expertadvice_pi1%5Bshowitem%5D=2804&tx_expertadvice_pi1%5Bsearch%5D=ISET], but I want to know if there a place in France where this test can be performed? Otherwise, do you have more information? Thank for your reply
15.09.2014
Suspicion of CF
Hello on your site again, Still with not that many answers to my questions regarding the diagnosis of my child who is now 15 years old. I'd like your opinion, my son is pancreatic insufficient, so he takes Creon. He had 3 sweat tests all positive, but the genetic test is negative!! He has a deficiency of vitamin k but with weekly oral dose as well with i.m. it doesn’t change anything! His has a clotting problem with a decreased prothrombin time (54%), deficiency of factors II, V, VII, X. We just have consulted a doctor for CF who does NOT exclude CF. We are actually all in doubt because both fecal elastase and coagulation factors rise and decrease. It’s always changing !!! What do you think ??? Can you tell me more??? I cannot stand any more, after 8 months of exams without accurate diagnosis !!!! Do you think he could develop a new form of CF not yet known? Doctors told me that all is a great mystery !! I'd like to have your opinion please !!!
15.09.2014
Scarlet fever
Hello, My 5-year-old little boy had the scarlet fever twice in 2 and a half months. He finished his antibiotic treatment on Friday (that he had for 14 days) and he began again to have the symptoms 3 days after the end of the treatment. He has a visit tomorrow morning at our family doctor but can you tell me what the scarlet fever can have as consequence on a CF child and why does it return so often? Thank you in advance
15.09.2014
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