Topics

Vaccinations
Dear team, my son, 27 years old, CF patient, has to go to Asia (Mumbai, Shanghai) for ten days on business. Which vaccinations would you recommend (which urgently, which only optionally)? He is in relatively good health; pseudomonas about once or twice a year, and problems with mold fungus several years ago. Many thanks.
13.02.2011
Trichosporon
Dear expert team, we have the following question on behalf of our daughter (29 years old, CF): Her lungs have been colonized for several years with trichosporon, and she has been taking VFEND® (voriconazole) on and off for three years. Since the fungus is giving her a really hard time, she would like to know whether there are other options for medical treatment or still other things one could do to support the drugs in keeping the fungus at bay. Who has experience with the treatment of trichosporon? Many thanks for your effort.
13.02.2011
Side effect of azithromycin
My daughter, 6 years, CF, takes for about 2 years azithromycin permanent antibiotic treatment, every 2nd day 250mg. Can hair loss be a consequence? One has only to pull her hair slightly, then one has little bunches in the hand. Can I do something about it? Thanks!!
13.02.2011
5T-variant
What means: ....the 5T-variant (IVS8: TG11-5T/TG11-7T) could be detected in the polypyridmidine tract in intron 8 of the CFTR gene in heterozygous condition. Many thanks!
13.02.2011
hygiene
My son, 11 years, has a chronic pseudomonas aeruginosa infection since 2010, but the last sputum culture revealed no Pseudomonas aeruginosa (he is treated every two months alternating colistin and tobi). He wants to do a summer camp, sailing on Lake Serre-Ponçon (Alpes), but the showers are fed by water from the lake and disinfecting showers is not possible because of aseptic tank Should he still attend to this camp? Is there a risk ?
09.02.2011
Worsening of the lung function due to tobramycin inhalation
Dear expert team, I have been diagnosed (23, CF) with Pseudomonas aeruginosa lately for the first time. We decided to eradicate with 3x750mg ciprofloxacin p.o. over 3 weeks and inhalation with 2x300mg tobramycin with a 28-days-change with 2x2 Mio. I.U. Colistin over 6 months altogether. My general condition is not really well already for months - even before the finding of Pseudomonas - but also not really bad, either. Even after only 3 days of ciprofloxacin, I felt an improvement. I started on the 4th day additionally with the inhalation of tobramycin for the first time, whereupon the improvement disappeared nearly immediately and for the moment the same indifferent state as before appeared. During the whole time of inhalation with tobramycin I had nearly every day blood in the sputum, if only miminal amounts. According to the package insert possible side effects of tobramycin are a reduction of FEV1 as well as coughing blood. I maintained the therapy however like this and after there was no change at all for one week, finally again an improvement appeared. In the meantime I feel as good as I did not for years and the PA could not be detected in the last sputum. During the inhalation with Colistin I did not have any problems at all, shortly the second cycle of inhalation with tobramycin should begin. I am now worried, that because of the tobramycin my lung function decreases again to a fair to bad condition, as this time the respective antagonist in the form of ciprofloxacin is missing, which compensated the seemingly caused worsening of the lung function via tobramycin. Now I am thinking about it, how I should react, in case I realize that via the inhalation of Tobramycin my lung function gets indeed worse again. Should I stop the therapy and try to keep the good condition as long as possible, but risk however that the PA recolonizes in the short runs? Or should I continue the therapy for the 6 months even if I feel worse, then, but have higher chances that the PA does not recolonize for now? Many thanks for your advice in advance, Yours sincerely,
09.02.2011
Twins
If a twin suffers from CF, is the other child also ill or can it be totally healthy?
09.02.2011
Side effects after long-term therapy with azithromycin??
Hello, my 12-year-old son is chronically colonized with Pseudomonas aeruginosa (PSA) for two years. Since 6/2010 two times capsule-forming germs have been found in the throat swab. Since then he takes additionally azithromycin 250mg every second day besides Colistin and DNAse. As this therapy is planned as a long-term therapy we ask ourselves: Which side-effects does the drug have (arthropathy of the joints? Colonization with Streptococci? Occurence of resistance?) ? Is there an alternative to this kind of PSA-therapy?? Many thanks for your feedback.
09.02.2011
Staphyloccocus aureus
Hello, our daughter (13 months) has been diagnosed with the germ Staphylococcus aureus in the throat swab. She has it - since her diagnose 10 months ago - now for the second time. Apart from the mucus she has, which she can cough out very well however, she has no symptoms of infection. We inhale two times a day with NaCl and salbutamol as well as ipratropium bromide. Our CF-center does not regard it as necessary to give an antibiotic. When the germ occured for the first time, however, the former physician of our center prescribed a cephalosporine. In the meantime there has been a change of the physician in charge. Is it now right that she does'nt take an antibiotic? Will she get rid of the germ again? Is this germ "dangerous"? How can she get this germ as we have no animals and she has had no contact with animals? I would be very pleased if you could answer the above mentioned questions. Many thanks for your efforts.
09.02.2011
Mutation
Hello My daughter has CF and is almost 4 years old. She is clearly pancreatic insufficient and has a rather moderate pulmonary impairment, (say Staphylococcus colonization, and started Pulmozyme 6 months ago) with mutations deltaF508 /1898 +1 G> A. I failed to get information from my CF Center about this mutation. I'd like to know what's its class and its exact function (CFTR production or not etc...) and whether other similar cases have been described. Thank you.
08.02.2011
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