Topics

Afflovest®
Hello Afflovest® is a type of vest available for some time in the US. It seems that the use of this supplement vest of respiratory physiotherapy improves the health of users and their FEV1. How is it that we do not hear about it in France? Are you aware of the use of this vest by individuals with cystic fibrosis in France and their experience ? Thank you in advance for your response.
16.04.2016
Mycobacterium abscessus towards double lung transplantation
Dear expert team, a CF patient wrote recently to me, that she could not get a lung transplant because of a colonization with Mycobacterium abscessus with recurrent infections (with sporadic finding of S. maltophilia + recently Pseudallescheria Boydii). I do not find any literature about this. A recent review article form the German physicians newspaper, does for example not mention this at all. Is it possible that the patient is believing a hasty assessment? In this context I would propose to widen the search function of this valuable Archive with a similarity function. E.g. the word "abscessus" appears also as "absessus" and "abcessus". It is a pitty if one does not find these (incorrect) variants of a potential life saving article! I would ask you for a quick answer, as she does not tolerate the antibiotics, that have been used for an longer time (Linezolid; peripheral neuropathy), and that had to be stopped a few days ago. Best regards, K.-R. H.
16.04.2016
Sweat test with Kalydeco®
Dear physicians, my son has the mutations G1244E and R553X and gets Kalydeco® for 2 months. He has had a sweat test result of 110 at his diagnose about 2 years ago and now after two months of Kalydeco® the value went down to 80. My question is, do you think that this is the endpoint or can one still hope, that the value goes down further? We will repeat the test after 2 or 3 further months. My son is 4.5 years old and has been diagnosed at the age of 2.5. How should the value be that he has no constraints because of his CF? Many thanks in advance, D.R. mother of the child
16.04.2016
Healing of genetic disorders?
The university of Dresden (Germany) together with the Heinrich-Pette institute in Hamburg, Germany, developed a method, that can liberate the HIV code from the human genetic material. It is reported, that with that there is a chance, to heal genetic diseases, as with this method one could influence the human genetic material. Would such a method be possibly able to heal also the illness of CF?
16.04.2016
Function of correctors for stop mutations
Dear ladies and gentlemen, I would like to know, how exactly the correctors (e.g. Lumacaftor) are acting on stop mutations on the molecular genetic level. Are those synthetic tRNAs that bind to the wrong stop codons? I would be pleased if you could explain the function of the corrector molecule to me. Many thanks and best regards.
16.04.2016
Does an ICM (intestinal current measurement) make sense?
Dear ladies and gentlemen, there is an adolescent patient, who has had a sweat test result in the borderline area at a CF center and in a second experienced CF center the sweat test results were as well in the borderline area (chloride concentration in the sweat with pilocarpine ionotophoresis) and whose sequence analysis of the CFTR gene as well as a TEPD measurement were normal. Nevertheless, the pediatrician is suspecting the illness of CF, not in the "classical sense" (there is no pancreatic insufficiency underlying), because of the picture of the illness (frequent infections, frequent bronchitis, permanent production of sputum (also in infection-free periods), loss of energy, unwanted weight loss (in the mean time underweight), biliary reflux gastiritis) - does it in your opinion make sense, to have in the end also an ICM (intestinal current measurement) done, in order to safely exclude the illness of CF? The CF center says it is through with the topic CF. As in this center they also thought of a possible PCD (primary ciliary dyskinesia), a high-frequency video-microscopy had been done there, which had to be controlled. We have been sent to an experienced university hospital, that is investigating PCD at the moment, however according to them, it is not very probable that a PCD is underlying. Now a gastro-esophageal reflux has been diagnosed (via pH measurement) and an anti-reflux operation is considered. I emphazise, that we have been very content everywhere. My questions arises only from the sorrows that are caused by the long illness history of my child . Many thanks for your answer.
16.04.2016
Fat and Creon
Hello Our 22-months-old CF child takes 12 to 13 Creon capsules per day and yet his stools are fairly fat or even very fat. We have always been advised to enrich the diet but actually it only increases the amount of fat in stools. Can there be an increase in the Creon safely or we will have to review his diet? Are oily stools giving pain to the child? Thank you.
08.04.2016
Childhood diseases
Hello, My 3.5-year-old son started school in September and since he had 5 ear infections, laryngitis, some colds, a little bronchitis, gastro ... his cough occurs almost daily (with ups and downs, sometimes the day, sometimes the night, sometimes all the time ...). How can we know if he is just as sick as his school friends and if it will get better next year or whether it is a CF exacerbation? What can we do ? Should we take special precautions? Thank you.
08.04.2016
Breastfeeding for CF mother
Hello I am pediatric nurse and I met a future CF Mom. She wonders about her ability or not to breastfeed her newborn. I don't know what to say. Thank you
08.04.2016
ISET (Isolation by Size of Tumor cells) Test
Hello, We have learned that we are CF carriers and we now expect a child (4th months of pregnancy). Now we are extremely anxious. We live in Switzerland and it seems that the Iset test for CF is not available in Switzerland. Can you advise us how to do this test in a French hospital near Geneva? We thank you in advance for your response. Best regards
08.04.2016
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