Topics

Persistent Pseudomonas aeruginosa
Dear expert team, Pseudomonas aeruginosa has been found in the samples of our daughter (6. yrs) for the first time in january this year. Inhalation with colistin followed for 4 weeks together with Ciprofloxacin orally. A new throat swab after 4 weeks had been free of PA. Shotly after this, another throat swab was done, the PA has again been found. According to our center, our daughter inhaled now 2 times daily a mixture of Colistin and Tobramycin and took Levofloxacin. After 4 weeks, only the inhalaton of Colistin was continued and the next swab was PA free. Again some time later the next swab was done, this had again PA. Then she inhaled again Colistin and Tobi together and took again Levofloxacin. After the 4 weeks we only contiunded Colistin. The next swab was good again and the one after that had again PA. This continues until today and now we have again an actual finding of PA. The only thing that changed is that the number of germs reduced from massive to moderate. Now we are quite hopeless that the PA will go away ever again. Now the center want to add a third inhalative antibiotic drug before in the end an i.v. therapy is done. One gets the information from other centers that the i.v. therapy is initiated if the first trial of 4 weeks to eliminate PA was not successful. Our center is of the opionion, that the inhalative therapy against the PA is more effective and says that there would be no guarantee, that the PA disappears after 14 days of i.v. We are quite insecure and do not know what to do. It would be nice to get another opinion. Many thanks
12.09.2015
P. aerugionsa repeatedly in the nose swab
Dear expert team, I have read the very helpful contribution of Dr. Jochen G. Mainz about the question: "Pseudomonas in the nasal washing" (dated 01.07.2014). In my 10-year-old son, P.a. has been found repeatedly again and again occasionally, we have had different therapies, oral and inhalative, as well as i.v. against it, unfortunately without success. Hereby we used for inhalation mostly Colistin, also once Tobramycin, as well as Ciprofloxacin orally. In the middle of may a mucoid form has been diagnosed the first time, again occasionally -->immediately i.v. therapy. Now the germ can still be found after i.v. therapy in the nose swab, however not in the throat swab. For this, our center in Munich, Germany, has only few experience how this can be delt with success. The Pari-Sinus device is seemingly quite a crude device, especially for a young child (as mentioned 10 years old). Which way would you propose (I know about legal disclaimer and the aims of remote diagnosis). I would be very happy about an answer, many thanks in advance and best regards, H.S.
12.09.2015
Vaccination against Pseudomonas?
Hello, is there any research concerning a vaccination against Pseudomonas? Could daily anti-bacterial mouth washings help to avoid a colonization with Pseudomonas? Many thanks!
12.09.2015
Amniocentesis
I was checked for >98% of CF mutations and I was found to carry the DF508 one. I am pregnant, therefor my husband was checked as well. If the results are negative, then the fetus has a 50% chance to be a carrier? If my husband is found to carry the same gene, then there is a 25% chance for the fetus to have CF and I must do an amniocentesis to check this possibility? If my husband has another mutation, then what must we do? Thank you.
14.08.2015
Treatment for CF
Is there a treatment/cure for a person with the mutations DF508 & 621+1G>T?
14.08.2015
Garden hose - Pseudomonas
I have a question about the risk of Pseudomonas infection. Now in the summer, many children use garden hoses to splash around with water. My daughter would like to join this fun, of course. I am not sure, however, whether Pseudomonas will grow in these hoses. And if so, is it sufficient to let the water run through the hoses for some time? Many thanks and kind regards.
14.08.2015
Heterozygous F508del/2789+5G>A
Hello, I am 56 years old and CF compound heterozygous F508del / 2789 + 5G> A. I read several foreign sites that ivacaftor was prescribed to patients with the same mutations than me, with results that seem spectacular. My pancreas hardly works, but being still pre-diabetic I try to save the few that still works !! Also thank you for getting more information and telling me if this medication applies for my second mutation in different countries, and also how to try to save some of my pancreas, if I can take this drug in France with derogation if needed and if no contra-indications! The time is particularly counted, my pancreas will be completely destroyed before the other medications do exist, it is clear. And to be quite diabetic is harder to live than what I already know. Thank you for understanding. Also instructive reading for all those who help us much. Regards.
05.08.2015
Research and mutation c.489+1G>T
Hello, I wonder if there are many people homozygous for the mutation c.489 + 1G> T (621 + 1G> T) and what about therapeutic or research, is there hope in this case?
05.08.2015
F508del Heterozygous
Hello, I read this article very encouraging: http://www.news-medical.net/news/20150519/Two-drug-combination-improves-lung-function-in-some-cystic-fibrosis-patients.aspx But for heterozygous F508del, do not we say that if we correct a mutation, we "cure" the disease ?? So, those who have at least one F508del mutation, they are not as concerned ?? In advance thank you for your reply Best Regards
05.08.2015
H199Y mutation
Hello, my daughter born in 1995 has a H199Y mutation not listed in one of the four mutation classes (confirmed by doctor and scientist of the French CF association). How is this possible and how to know in this case if one of the latest treatments and future developments will be of concern? Thank you.
05.08.2015
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