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Perenterol® or other probiotics on the prescription?
[original question & answer come from the German platform] Hello, I have just started a long-term antibiotic treatment with Zithromax® (Azithromycin), in addition to an interval therapy with Cotrim® (Cotrimoxazole): intake for 10 days, pause for 4 weeks. That is really stressing my intestinal tract, so my physician has prescribed Perenterol® (containing the yeast Sacharomyces cerevisiae), but the arising costs are just covered for minors, like the pharmacist said. Are there any exceptional rules for cystic fibrosis or long term antibiotics? Are there any alternatives? I cannot afford this medicine on my own, but unfortunately I am already suffering of the side-effects like flatulence and diarrhea. Thank you.
13.09.2015
Testing of baby when CF is diagnosed
Dear experts, My daughter (11 weeks old), was born on the 5th May 2015 with an intestinal obstruction. After three weeks the result of the genetic testing arrived: positive (cystic fibrosis). The CF center decided it was necessary to take Kreon© (pancreatin) for kids and to inhale solution of sodium chloride (3%). The lungs are okay and she gains weight. In addition to this (I requested this on my own) after the next visit there will be sent a stool sample into the laboratory in order to investigate whether there is a residual pancreatic function. There has not been done yet anything more. My question: Since when and in which intervals the swabs have to be taken? I read that in 30% of the babies in the first years, the germ Staphylococcus aureus is detected and moreover 30% have this germ already after their birth. My baby is just 11 weeks old, and that is why I just wanted to know whether one can exclude this germ? How safe is it? In the question of March 2015 (page 6) I have read that the clinic sends even sputum into the laboratory for checking purposes. (baby inhales the solution of sodium chloride and as it coughs, the sputum is sucked). The baby hasn’t even had any symptoms…; however the germ was detected and thus, it could be treated immediately. What will happen if my daughter has the germ without showing any symptoms? And therefore no investigation is made?
12.09.2015
Possibility of CF
My son is 7 years old, has chronic cough and does not gain weight easily (he weighs 20 kg and is 119 cm tall). Can we as parents check if he has CF? I was told that if I taste his sweat I will find out. My son’s sweat is not that salty. I have visited a paediatric pneumunologist in Thessaloniki. He told that my son does not appear to have CF, and that at such an age it would show! I still worry though.
12.09.2015
Hello
In my life there are quite some setbacks. As a child I suffered from recurrent infections, pneumonias, bronchitis, tonsillitis. Always one was followed by the other. With 14 the sinusitis began, that did not disappear until now at the age of 35. I have had also liver problems and a pressure feeling. Since I do a gluten-free nutrition, this improved however. Every morning, however, I have sputum with viscous secretions looking like a fluid. I cannot run, I could never blow up a pool. Also I have heart problems: I cannot image to suffer from CF, it would have been without treatment for 35 years - is such a thing possible?
12.09.2015
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
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