Topics

Dental prophylaxis for children
Hello, My daughter (CF) is 6 years old now and my dentist would like to start with regular dental prophylaxis. I already know the procedure from my older son (non-CF). Among other things there is a blue liquid which is dabbed on the teeth to make visible whether the child has brushed its teeth well. During the last appointment with my son it occurred to me if using this “blue ink” would also be fine for my daughter since the little bottle was already half empty when the dentist took the liquid from it for my son’s treatment. I do not know how long this bottle has been open already. In this dental surgery/practice prophylaxis is only done once a week. Therefore, I could imagine that such a bottle is probably used during several prophylaxis days, i.e. during several weeks. Are there bacterial concerns for our daughter with CF? Should I ask the dentist if she could open a fresh bottle for my daughter every time? Thank you for your answer.
16.05.2015
Hygiene and cleaning of the house
Hello, Which are hygiene rules to be respected in the home of a CF baby about: - washing powder knowing that the clothes of a baby can be washed in no more than 40 degrees. - the dishwasher, how and when disinfected? - the refrigerator? - the cleaning of the work surface and toilets + bathroom? - what is it necessary to disinfect or not? - is a steam cleaner effective to clean a bathroom to avoid the use of chemicals? - how long is it necessary to sterilize feeding-bottles and teats? Thank you for your help
16.05.2015
Gardening and kitchen garden
Hello, My 4-year-old CF son has no particular worry like aspergillosis or pseudomonas infection (at least for now). He wishes that we plant flowers and that we maintain a kitchen garden together. I know that the aspergillus is in the ground, the compost etc.... If my son wants to do gardening, which are the precautions to respect? Thank you in advance
16.05.2015
Food supplements
Dear experts, Our son is two years old, is very pancreatic insufficient however otherwise one does not notice anything (yet). We are very faithful in following the conventional medicine therapy, and we will pursue it in any case like recommended. Now we ask ourselves, if we could do probably additionally "even more": What do you think about curcumin, krill oil and MSM (methylsulphonylmethan) as complementary therapy in case of CF? Even if some studies do not show any effect - could these perparations harm if they indeed do not have any effect? Thus, more concrete: does anything speak against a trial with these preparations? If it cannot harm: which preparations and which dosage could we try in case of our son? Many thanks!
06.05.2015
Pneumothorax
Hello, How do I have to behave after a pneumothorax, thus which kind of exercise is suitable and what should I avoid? Furthermore, I have my drainage been removed a few days ago and since then the scar pinches at each cough and it bubbles, is that normal, as I have also a skin emphysema at this location?
06.05.2015
Achromobacter xylosoxidans
Dear expert team, in diverse treads in the past there can again and again be read, that a colonization with Achromobacter xyl. should be treated according to the individual course. Starting situation: my daughter (17y) is chronically colonized with Achromobacter + Staphylococcus and again and again also with Aspergillus. In general she has quite a good health status, however since the last year still 13% creepingly loss of lung function (distributed over the year) until now, that could not be regained again. And that in spite of constant oral treatment of the diverse germs with amoxicillin + claviulanic acid, cefalexin, cotrimoxazol, colistin (inhal), itraconazol for 4 months for aspergillus + additionally i.v. therapy in august 2014 - this did really bring no success, either! However, she has an allergic reaction to trimethroprim/sufametrol (i.v.) - we could finish the i.v. though - probably it however did not totally work therefore? At the moment all germs are again present, including Aspergillus. Now my questions: my observation concerning symptoms (suspicion of myself related to Achromobacter) are related to a dry unproductive cough, which is followed in the course of time by a produktive hawk. This is consistent with the statements of also Achromobacter-colonized patients on diverse internet platforms. Are these symptoms correlated to Achromobacter known to you? And which drugs could one still try if Trimethoprim/Sulfametrol (is mentioned to be the best against Achromobacter in our CF center) is not working? One can find on diverse patients internet platforms Minocyclin respectively Cefpodoxim orally respecitvely Levofloxacin for inhalation? Is this going to help? Many thanks in advance, I.D.
06.05.2015
Vaccination against pneumococci / measles
Dear expert team, according to the acutal STIKO-recommendations (permanent vaccination commission of the German Robert-Koch institute) children and adults with a special risk (e.g. CF) should get a pneumococcal vaccination. I am a CF patient (52y) with permanent antibiotic therapy with azithromycin. In the year 2009 I have been vaccinated with Pneumovax 23. Unfortunately I had a very strong vaccination reaction (upper arm strongly swollen and painful). Now I have read, that for some years the new vaccine prevenar 13 is licensed for adults, with better tolerance. It would cover the most important germs of this group. Is there the possibility to change to this vaccine now? Measles vaccination It is unfortunately not known to me, if I got the measles vaccination in childhood. From the immunization card originating from GDR times it can not be seen, if it had been given. I did not have measles as a child, either. How important would such a vaccination be, if neceassary at all? Many thanks, S.
06.05.2015
Sport test
Hello, what does the sport test include in the frame of the year-check of CF patients? Is it the 6-minutes-walking test respecitvely running test? Or are there any further "exercises"? And what is there measured in detail? Thank you
06.05.2015
Acting mechanisms of Ivacaftor and Lumacaftor
Hello, I have a question about the acting mechanisms of Ivacaftor and Lumacaftor. In how far do they change the molecule respectively which biochemical processes are involved? Best regards
06.05.2015
Wrong sweat test result because of pretzel?
Hello, my 4-year-old son will have a sweat test next Monday because of the many bronchitis he has had. Today, he ate a pretzel and yesterday some salt sticks/pretzel sticks. Could this cause a wrong result? Furthermore, he inhales Flutide 125 µg twice per day, does this drug has any influence on the test result? Best regards, J.
06.05.2015
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