Vertex-770 potentiator
Dear expert team, my daughters genotype is DF508 and R347P, now that the drug for G551D is going forth for approval because of its effects on the gene do you have any further data to support that this drug would also be effective on other class IV types like R347P as I know it has some effect on gene type R117H. Any information on this would be greatly received. Many thanks Charni
CF in what seems like healthy baby
The little boy in question 10 wks. old was diagnosed with CF during routine heel test. Genes have been identified as G508 Delta and G551 which I understand are Class II and III so despite being too early to run sweat test no doubt regarding diagnosis. He has no 'salty' taste off him, gaining weight averaging 4 - 5oz per week, no oily stools, bottle fed and not greedy for additional milk, no cough etc. and high on the height scale. He immediately was seen by a 'physio at his CF centre, put on the little mask with 'physio in between once a day and on daily antibiotic twice daily as a preventative measure. Question is it because he is at a very young age that absolutely no symptoms of CF are showing? Also he is extremely distressed taking the anti biotic by syringe and often spits this out and has to be given again. Note opinions vary on using anti biotic when only preventative. Do you think this should be discussed more fully with the CF consultant at the clinic owing to the distress to both parents and child it is causing? Apologise for two questions. Thank you.
Aircleaners or homeventilation
Hi I have been searching the internet to get info about aircleaning/air purifiers and the positive effect it might have on cf. In the us i can can se many who uses this. It is a machine with a filter(hepa) it is not a humidifier. here is the link for one what is your opinion as experts is this a good solution that could help my child age 3 years or is it better investing in a complette home ventilation system like this Landvad
treatment of ralstonia pickettii
Dear team, Recently the germ Ralstonia pickettii was found in my sputum for the first time. It was resistant against all tested antibiotics. In between my sputum is tested in a more specialized lab but there is no result so far. These results shall help to organize the next infusions which are due in about 3 months. My doctors at the cf-policlinic are not sure about the effect of this germ since there seems to be little experience. They asked me to do nothing at the moment since they hope the germ doesn’t change my situation for the worse. I am very concerned and afraid to miss anything which might be useful or even essential to do shortly after this discovery. Somewhere on the internet I read that the fast discovery of Ralstonia pickettii allows a fast therapy with good results. But I have no idea what kind of therapy was meant. Do you have any further experience? Thank you very much. J.
Hello I am from Romania, please tell me where I can buy Aquadeks from. Best regards
can i use ursodeoxycholic acid because my SGPT is 73 with out any liver diseas, & viral markers is also negative, kindly advice me suitable for i am doing my SGPT is normal.
treatment of pseudomonas or other bacterias
First of all I would like to tell that I have son with CF, 2 y.o. He had pseudomonas 1 year ago, treated succesfully but now he has pseudomonas again. Waiting for 2nd phase of treatment in the hospital. I want to tell another thing:I visited in Sicilia, Italia Terme di Sciacca. I spoke to the doctor about my son´s diagnosis and he recomended me visit vith him small room with sulfur humedad which comes directly from the ground. He will sit in the small room and breathing this sulfur directly from the space of room (small drops of sulfur wather, like from PARI BOY equipment). I would like to ask if there is somebody who has the same experience. And what does the doctors say about it? Thank you Blanka
Hi I'm from Poland. In this moment we have problem whit bay AquADEKs. When in Germany we cam bay this product. Sławek
CFTRdele2, 3 (21kb)
Our baby has 8 months and was diagnosticated at 6 moths with CF. Now we have received the results from the genetic test:" Heterozygous carrier of a 21 kilobase deletion in the CFTR gene, which leads to a loss of exons 2 and 3 (CFTRdele2, 3 (21kb) A second mutation was not found." also, he was diagnosticated with Severe exocrine pancreatic insufficiency. No lung bacteria was found, no other lung disease. Since in Romania he is the only case, we don't have much information on this specific mutation. Could you please explain us how this mutation will affect him? It is "good" that he has only this mutation or it's a very severe one? Thank you very much in advance
Hi my daughter is 3 years and pseudomonas is found for the second time in 2 months. Our center offers the same treatment again ( 4weeks of tobi inhalations and ciprofloxacin) it didn´t remove the pseudomonas this time and i am affraid it will not take it this time. I am aware that other centers are more agressive and would use 14 days of IV treatment and then 3 months of tobi. shall we accept the same treatment or ask for the agressive treatment? what would you do i am so affraid of the pseudomonas turning chronic. Landvad
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