Topics

Imminent pulmonary exacerbation due to construction emissions
We have a 3 year-old daughter with CF and live in a rented appartment with garden. An investor has taken over the premises and wants to sell the garden as building land and furthermore wants to carry out extensive structural changes in the house itself. We are afraid that the dust and exhaust emissions caused by that will lead to an exacerbation of our daughter’s state of health. Which legal possibilities are there to avoid the building measures or to delay them at least? Thank you in advance.
08.07.2008
Distented stomach
My daughter is 2 years old and was born with a meconium ileus. Therefore the diagnosis of CF was made very quickly. She has had an artificial anus that has been reposed. Since then she suffers from an extremely distended abdomen, in the ultrasound you see very very much air in the stomach and bowels. What can be the reasons for that and what can be done?
08.07.2008
Arthritis and CF - how to treat
I am a near 40 year old female with CF. The last 15 years I have suffered form arthritis, and the last 6 years it seems to have exploded. All of my fingers are now affected, and I have had several surgeries to remove destructions and to permanently stabilize joints, thus leaving my fingers stiff. My doctors tell me I can not use the new socalled biological(?) arthritis medicines, and therefore I am left with virtually no medication which can stall the distructive process in my joints, all over my body. Do you have any advice or suggestions as to medicines I could try which will not be harmfull to my CF? I have p.a. and FEV1 less than 50 %
08.07.2008
Soap bubbles/ Soap bubbles 2
Hello, I would like to know if Pseudomonas germs can proliferate in soap bubbles and if our child can be infected that way. Many thanks for your reply. (Soap bubbles 2) Hello, The question was more if Pseudomonas can proliferate in the container filled with soap solution itself, for example in a "Pustefix" container. Best regards
08.07.2008
Staphylococcus aureus and Haemophilus influenzae
Dear experts, the sputum of my 8-year old daughter (CF) was positive for Staphylococcus aureus again and again in the course of the last year and sometimes positive for Haemophilus influenzae. This was treated orally with cefaclor, finally with a 14-day i.v.-therapy (cefotiam). The cough disappeared totally. After being back at school for some days, at first a rhinitis developped followed soon by a spasmodic cough. Masses of Staphylococcus and plenty of Haemophilus influenzae have again been found in the sputum. Now she takes again cefaclor orally. Which future therapeutic strategies such as a switch of the antibiotic drug or permanent antibiotic therapy do we have to take into account? Thanks in advance and best regards,
08.07.2008
Refusal of MRI-investigation
My daughter suffers from CF with a severe pulmonary involvement. One year ago, a MRI-investigation had been done in order to find out if the mostly destroyed left lower lobe should be removed (because probably lesion). As the rest of the lung did not look much better, this was disregarded. Now another investigation should be performed. My daughter refuses this, even with anesthesia she does not want to have this done. I do not see the benefit of this, as an operation is out of question at the moment anyway and the child is doing bad very often, especially from the psychical point of view. Therefore we want to do only those things to her that have to be done absolutely (she needs oxygen 24 hours a day). Now we are put under pressure from the outpatient clinic. Am I allowed to refuse my assent for such an investigation?
08.07.2008
Examination by heart catheter
My son, 30 years old, advanced CF, runs an increased temperature of about 37.8 degree Celsius in the evenings. His doctor obviously does not attribute this to pneumonia. He rather wants to search for bacteria on the heart by heart catheter. I never heart of anything like that in connection with CF. Therefore I am sceptical and actually opposed to such an examination. The doctor, however, thinks it is absolutely necessary. (During IVs my son’s body temperature is normal and the CRP drops drastically.) I request a clear and open sentence if this invasive examination is in fact indicated. Thank you very much, With kind regards
07.07.2008
Pseudomonas in toothpaste
Is it true that Pseudomonas bacteria can contaminate toothpaste. Are there alternatives to evade this daily danger of colonization? Dr. Grün
07.07.2008
Again day light bath
Hi, I don’t understand whether air ventilation substitutes for day light bath and can eliminate Pseudomonas aerosols.
07.07.2008
To run off water reservoirs
I have read in diverse guidebooks that it is important to let water run off the taps, showers etc. in the mornings, before I myself as a CF patients am going to use them. Is one time a day sufficient, or shoud the procedere be repeated alfter a longer period of stagnation (e.g. > 6 hours, shower in the evening)? Best regards,
07.07.2008
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