Topics

Nasal polyps
Dear expert team, Our daughter - 3.5 years old- has been diagnosed with CF in december last year. Her main problem are nasal polyps. These have been operated in december last year (removal of a massive endonasal polyposis, preparation of a large window in the maxillary sinus with the middle nasal duct and removal of polypoid material from the maxillary sinus). 4 to 6 weeks after the operation the polyps reoccured in the original extent. Since then breathing through the nose is totally excluded. Until now the treating physicians have not been able to cope with this problem. Our daughter is treated for about 4 weeks with Triamcinolon nasal spray. No improvement until now. We do not want a further operation been done to our daughter at the moment (if possible). We are afraid, that also a second operation would not be sucessful for a longer period of time. Which kind of therapeutic options are there yet resp. could you propose to us? Are there any specialists in the area of Krefeld (Germany) who are specialized in problems with nasal polyps of CF patients or who are experienced? Many thanks in advance.
10.10.2011
bronchitol®
Hello, could you please tell me if inhalative bronchitol® (dry powder of mannitol) is already available in Germany? Many thanks
10.10.2011
stenotrophomonas maltophilia
To which hospital can one address to?
10.10.2011
CF yes or no?
Hello, my son (19 weeks old) has had a sweat test 3 times and it was pathologic 3 times. Now the final result of the genetic analysis is still underway. However, I got an intermittend report: Mutation 2183AA>G (HGVS- Nomenklatur: c.2051_2052delAAinsG,Exon 14, CFTR-Gen) in heterozygous form, as well as 33 further frequent mutations: G85E, 394delTT, R117H, 621+1G^T,711+1G^T, 1078delT, R334W, R347P, R347H, A455E, I507del, F508del, V520F, 1717-1G^A, G542X, S549R, S549N, G551D, R553X, R560T, 1898+1G^A, 2183AA^G, 2184delA, 2789+5G^A, 3120+1G^A, R1162X, 3659delC, 3849+10kbC^T, 3876delA, 3905insT, W1282X, u. N1303K Unfortunately, I did not get a real explanation in the hospital, and the appointment in the CF-center is still a bit away. I only know, that the genetic analysis is not finished, yet. The pancreatic elastase is about 500. At the moment his weight is stagnant, however we already have been 2 times in hopsital as he decompensated. His skin is extremely salty. I have once learned (I am physical technical assistant) that 2 genes have to be found, however I have no much knowledge about genetics. Can it be that he has CF even if we have the assurance only for 1 gene? And how long does a genetic analysis take? The arrival of the sample was the 26.07.11. Many thanks for your answer, H. 31.08.11 --addition from the ECORN-CF team: Before the answer to the above question we got the following additional information: "Many thanks for your efforts. We know by now, that he has CF. The mutations 2183AA>G and L206W have been found in compound heterozygousity. Now I have a new question: Is this a frequent combination or is it known in such a way that one can say something to the course of the illness? I am of course aware of the fact that there are always variations. Greetings, H.
10.10.2011
Heterozygous mutation F508del with deletion exon 17a and b
Dear ladies and gentlemen, is there any research about the above mentioned mutations? Could VX770 be also helpful here? What does the above mentioned mutation mean? We have been told that our daughter (1 year) will be with the utmost probability compound heterozygous. Many thanks for your answer in advance
10.10.2011
Clinical trial in aromatherapy
Thank you Madame Ronayette for your answer, which raises another one: why the topic of aromatherapy is not currently investigated in clinical research? (I think including massage application, in addition to conventional treatment)? Does medical education in France today includes sessions on this topic ? Thank you in advance.
10.10.2011
Reliability of the sweat test
My 6 years old son has been diagnosed with bronchectasis. The chlild, apart from a chronic cough, does not have any other symptoms and is developing normally. Our doctor recommended for the child to have a sweat test, which was negative. Does the sweat test suffice to safley exlcude CF?
04.10.2011
Air conditioning and CF
When I start using the air conditiong at home my child has an exarcebation of pseudomonas? Is it a random coincidence? What other factor may play a role? The technician disinfected the unit. How can I avoid pseudomonas in general?
04.10.2011
Impact of Pseudomonas aeruginosa and treatment strategies
Hello We are the parents of a 2 years old patient with CF, infected by Pseudomonas aeruginosa since he was 6 months old. We would like to know whether it’s the case of many patients on France? Despite different treatment strategies, our kid can’t get rid of this bacteria; our physician says that it is a chronic colonization and that our kid won’t ever get rid of it. He also says that even if the CF adults chronically colonized are usually less healthy, some of them are doing well. However, we have met parents whose children could have get rid of it and we heard about “infant pseudomonas”, non-mucoid. We are looking for some references, statistical data to help to define strategies with our CF center: median age of chronic colonization, correlation with survival, relevance of a first eradication, eradication possibility when the colonization started early in childhood. Are there studies in other countries and where can we found them? Thank you
04.10.2011
Boyfriend HIV positive
Hello, I had a lung transplant nine months ago. Now I have fallen in love and my boyfriend is HIV positive. What do we have to keep in mind, and what are the risks? Many thanks for your answer!
04.10.2011
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