Topics

Pseudomonas aeruginosa and Staphylococcus bacteriae
Dear, Can patients with CF and lung infection with eg Pseudomonas cough up bits of tissue?
19.07.2015
Blue Flag and swimming for CF patients
The Blue Flag is an international quality label in Flanders awarded by the Association Bond Beter Leefmilieu (BBL) and the Foundation for Environmental Education (FEE) and guarantees sustainable quality tourism on the coast and on inland waters. With this label Marinas and swimming ponds can differentiate themselves in water quality, environmental management, environmental education and safety. As the quality label is to be renewed every year, choosing for the Blue Flag requires a sustained effort from the hosts. The question: Can we assume that all children and adults with cystic fibrosis can swim in waters with the flag label? I think about swimming in ponds like De Lilse Bergen, het Zilvermeer, de Mosten , de Gavers, etc... Usually excursions are planned by youth associations, schools and sports days/camps. Many thanks for your reply
19.07.2015
CF like disease
Hello, What does this diagnosis mean for our child? (cough, bacterial colonization, pancreatic insufficiency) Friends told us that the genetic defect is not located on the usual gene but outside so that a mutation cannot be determined and thus the new therapy options cannot be applied. Thank you!
19.07.2015
Exacerbation after infection
I am a 40-year-old patient with CF and have 3 children. Actually I got a beginning cold last week with strong throat ache and rhinitis, after about 2 days a got a big spot (?) at the chin, which was very painful. My treating physician was unfortunately on holiday. I was right away beginning to take in ciprofloxacin 500 2x1 and doxycyclin 1x1 tablet, additionally I have a permanent antibiotic therapy with azithromycin 500 3 times a week. After two days of ciprofloxacin complete worsening, impression of dyspnea (strong obstruction), what should I do then, the physicians in my hometown are not familiar with CF, therefore I took a new antibiotic drug, namely cotrimoxazole 800mg 2 x 1 tablet and doxycyclin; furthermore I inhale with colistin and took prednisolon after a scheme, beginning with 50mg, at the end of about one week reduced gradually. This scheme I got from my physician last year in a similar case. In the meantime I have a bit less dyspnea, however it is still not really good, as in my family there are many infections....I will begin today with the inhalation of aztreonam, lets see what this will do. Otherwise I would like to ask which kind of therapies you would propose; do you also know such cuts? I have the impression that if one gets the menstruation, this has also an influence on the immune system, I have realized that I am more susceptible for infections then. Furhtermore I noticed, that in that time haemoptysis occurs more often, did you also hear about such experiences of your patients? Otherwise I can say about my person that I am retired however I am taking care of a household with 5 people (husband 41, children 17, 11, 2 and me), I am doing the washing, clean, prepare the meals, take care of, play and am just a normal housewife. What else can I do in case of dyspnea and obstruction, as I am also taking spray with ipratropium bromide and fenoterol. Inhalation with NaCl 0,9% and 8 drops of salbutamol 3 times a day. Best regards and many thanks.
07.07.2015
Intron 8 7t/7t Exon 13 D727y
Dear Sir or Madam, My 10-year-old daughter (CF) was tested in 2009 because she often had abdominal pain with diarrhea and also respiratory infections and bronchitis. Our pediatrician sent us to the CF outpatient department of the University Hospital Leipzig [Germany]. A sweat test was done which was positive [pathological] with a value of 77 mmol. Since the value was increased the test was repeated: the result was 77 mmol again. A further test was done, this time the result was even 102 mmol. For the doctors at the University Hospital it was evident, thus, that my daughter has CF. After an internal change of the treating doctor, the new doctor wanted to do a genetic test for further clarification. The result, however, was negative. Since all symptoms indicated that she had CF, the doctors decided to have a complete sequencing done (Hannover laboratory); this was also negative. In fact, two mutations were found (Intron 8 – 7t/7t and D727y im Exon 13) but researchers have not found out so far if something relevant for the disease happens in the exon. At the beginning, the X-ray of the lungs was conspicuous. Partly, the creatinine value was strongly increased and the bile acid value was too high. Kidneys are a bit enlarged. She also has fructose and sorbitol intolerance. All diseases that could cause a false-positive test were excluded. A double-sided chloride testing was also negative (29 mmol) [normal]. I was told that the reason for the earlier positive sweat test results was the underweight of my daughter. Meanwhile she is 135 cm tall and weighs about 22-23 kgs, i.e. still underweight. Now, I learned that there are also forms of CF without any detectable mutations. I simply would like to know if my child has CF or not. Such a situation is very unsettling for a mother. I hope you can give me your opinion about the whole situation that would help me to get a clearer picture. First of all, I would like to know why the sweat tests were positive. Best regards
07.07.2015
Pulmonary condensation
Hello, The last Thorax x-ray of my 11 year old son revealed pulmonary condensation. I don't really understand what it mean´s or what are the consequences. Can you explain it to me? Thank you in advance
07.07.2015
Magic sand
Hello, Friends offered to our 4-year-old son a game called "Magic sand". It is a dry powder which we put in a bowl filled with water and which is sculpted in the water, like modelling clay. Once finished, we remove the sand of the water and we put back it in a bottle:then it's completely dry. Does it represent a danger for our CF son? Does he have to avoid playing it or do we have to take more precautions to wash his hands after the game and to prevent him from drinking the water? Thank you
28.06.2015
judo
Hello, My 6-year-old daughter wishes to practice judo. Is this activity advised because there are closer contacts closer with other children (who can potentially be sick, in particular the winter) and because of the environment (door: often closed, not much air)? Thank you in advance,
28.06.2015
Suggested sunken chest in case of a child with CF
Dear expert team, our daughter (6-years old), CF, has a slight deformation of the chest. At the last visit in the CF center, the physician in charge spoke about a suggested sunken chest. He said, that one could not do anything against it at the moment, that however, if it would disturb her when she is breathing, one could have it operated later. Now we have read a bit about the sunken chest in the internet, about the impairment of heart and lung because of it and also that one could do something against it probably with physiotherapy or suction cup. Now we rather do not like to wait, until it comes to impairments and we have the idea to present our daughter at a specialist. What is your opinion about this? Are there any experiences in case of children with CF, that have a sunken chest, are there therapeutical possibilities that can positively influence a sunken chest during growth? How can we find a suitable specialist? We are living in the south of the blackforest (Germany). We would be very pleased about your experience and recommendations. Many thanks!
28.06.2015
Bronchoscopy
My son (18 years old) has been diagnosed to have an atelectasis. He has a very good overall health status. His oxygen values are very good, lung function 103%, sputum findings o.k., very good weight, no dyspnea, physically fully stressable, therefore no impairment. Is there the possiblity, that the atelectasis can resolve fully by increased physiotherapy or is a bronchoscopy with flushing urgently necessary without cessation and can this also be done in the ambulant setting?
28.06.2015
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