Topics

How likely is the diagnosis of CF?
Hello, I write here as I am nearly turning crazy because of the fear about my newborn daughter. It is like this that she has been born 2 weeks before the calculated birth date via cesarian section, everything looked fine. However, she did not evacuate the meconium. She had an ileus (meconium clot), had to have an irrigation in order that it came out. Due to this, the doctors' suspicion of cystic fibrosis aroused. Blood for this screening (the special one for CF) has been sent to Heidelberg [Germany], which has fortunately been without pathological finding. Furthermore, the pancreatic elastase has been measured, the value was 146. However, my daughter was at that time only 2 weeks old, not 4 weeks old (and she has been born 2 weeks too early). Now we still should go to have a sweat test. However, this date is still far away and I do not stand this insecurity. My daughter gains weight well, drinks well and has regular bowel movements since the meconium was evacuated. She has been born 3 weeks ago with 2150 grams, lost weight on 2080 grams and weighs now already again 2720 grams. I know that you can not make a diagnosis, but can you give a judgment how likely you consider it that she suffers from CF? Best regards, M.
01.07.2013
Aspergillus
I have been treated for several weeks with inhalative vancomycin due to a sudden finding of MRSA germs in the sputum, additionally with oral dosages of rifampicin and cotrimoxazole. At the moment, the germ is not detectable anymore, instead masses of Aspergillus have been found. I have realized during this time a worsening of my FEV1, what can assumably be due to the high dosage of vancomycin. But also Aspergillus can cause those symtoms, to my knowledge that the lung function declines markedly within the shortest time. Now of course the Aspergillus should be fought with Sempera® (itraconazole), after the above mentioned antibiotic dosages have been finished. My question is now, did the mould fungus occur due to the 3-fold antibioitic treatment? And is it possible that, if the fungus is fought, the MRSA wins again through? Until now, my main germ has always been the Stenotrophomonas, which I have "born" almost unproblematically. Many thanks for your answer
01.07.2013
Alternative medicine
Hello, I am a CF patient of 26 years, and I often ask myself about the benefits that could bring homeopathy herb therapy, aromatherapy ... What I call "alternative medicine". In the treatment of CF, I deplore the fact that one focuses almost exclusively to treatment with traditional drugs. Far from having the idea to replace them, I'm sure (or rather, I guess) that the combination of conventional treatment and alternative medicine would be beneficial. Are these complementary approaches explored? What advice would you give? Thank you.
25.06.2013
Vaccinations for CF children
Each given vaccination contains also mercury, according to my knowledge. Which vaccinations are indispensable for CF children? Which should be avoided due to the burden with mercury?
25.06.2013
Pseudomonas in sputum of child with CF
My nephew who is 1 year old has been diagnosed twice with having pseudomonas in his sputum and has been put on medication to help with the infection. His parents have 2 cats and a few fish in a small tank in their home. My brother and sister in law are very good about keeping the house clean and disinfecting everything. Is there something they can do to help prevent my nephew from getting this infection?
24.06.2013
G542x/5t and pseudomonas
Good day, Can you please provide me the symptoms that someone with the above genes can have? My 7 year old son recently was diagnosed with Pseudomonas aeruginosa and is waiting for the results for the second sputum test. I was told that he might have more than usual sinus infections and the possibility of the absence of his vas deference. Now that he tested positive for PA should I be worried? ( I am) Thanking you in advance M.
24.06.2013
Aquadoodle game and pseudomonas aeruginosa
Hello, My daughter is 15 months old and suffers from CF. At home, we have an “aquadoodle game”, you must put water in a pen and write on a surface that will stain on contact with water and then will dry. I have put aside the game through fear of Pseudomonas aeruginosa, but I find more and more this game among my friends. How high is the risk of contamination? At 15 months, many things go through your mouth. Information on this famous game: https://www.google.fr/search?q=aquadoodle&client=safari&hl=fr&source=lnms&tbm=isch&sa=X&ei=V0qyUb7hMqqr0gWW_ICABA&ved=0CAkQ_AUoAQ&biw=1024&bih=672 Thank you for your answer!
24.06.2013
hygiene
Should you use single-dose sterile gel for the realization of ultrasound in patients with cystic fibrosis? Some patients require as there would be contamination of vials of ultrasound gel with Burkholderia Cepacia.
24.06.2013
vinegar
Hello. Does the vinegar destroy Pseudomonas aeruginosa? Best regards
24.06.2013
Drug
The drug Bretaris Genuair® is given in case of the illness "COPD". Has anybody experience if it is also suitable for CF?
24.06.2013
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