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non CF refelated
no CF question
07.05.2008
Inhalative corticosteroids - copayments in Germany
Dear ladies and gentlemen, the benefit of inhalative corticosteroids seems to be questionalbe in CF. As the course of my Cf illness is stable for many years however (on a quite low level; FEV1 about 1 l), and I do not want to endanger it, I inhale daily Flutide Forte [Gernman medical system](drug: fluticasone). Unfortunately, due to the current copayments (in germany) I have to pay another 12 Euros per inhaler besides the usual copayments. Do you know less expensive alternatives to that drug - my CF-doctor and my pharmacist are of the opinion that there are no such alternatives. Furthermore, according to my experience, Flutide Forte (drug: fluticasone) is more accommodating for me than for example Pulmicort (drug: budesonide). Yours sincerely and thank you for answering,
01.05.2008
about poliostosic fibrosic cystic displasia
This Question/Answer is not relevant for the archive and therefore has not been published.
30.04.2008
Burkholderia gladioli
Hello! The last throat culture test that our ten years old son underwent showed the presence of Burkholderia gladioli. The outpatient department told us that it was a harmless species, I should not google since Burkholderia was not harmless generally speaking. He should be treated i.v. immediately if possible and might not go to the University respectively to the physiotherapy unless a test showed negative evidence twice. However, this does not sound harmless at all! How is this germ to be evaluated and is there no other way of treatment? While googleling (of course I did) there was information about i.m. administration of Ceftadizim and oral administration of Cotrimoxazole. Furthermore, I found some comments regarding orchids; I have some orchids in the kitchen and living room. Thank you very much for your help. [part with telephone number removed] Best regards Heike Klug
28.04.2008
ABPA
How important is antifungic treatment in ABPA (voriko)? Is it more beneficial for the outcome if it is added to steroid treatment? How do you monitor outcome/relapses of ABPA?
28.04.2008
Right performance of the sweat test?
Hello, Last week a sweat test had been done to our daughter Lara (16 months), because she has had two times a severe bronchitis within 3 months, where she could not cough up the mucus. We have been informed about the result of 51, which does not really calm us after all we have read about it. Furthermore, we are not sure, if the test had been performed in the correct way. In Lara's case sweat had been collected on the back. However at the first attempt, both collection reservoirs leaked out after 20 minutes, so that there was not enough material left to do the test. Therefore we repeated the whole procedure right away, but this time Lara was not wrapped up as thick as before and should not run along the hallway as long as before. After 10-15 minutes the nurse controlled the reservoirs and said that now the amount was suitable for the test. In all publications however, it is mentioned that the period of collecting the sweat should be 30 minutes.... Can a lower deviation of time influence the result? And is it allowed to repeat the test right away if the first attempt did not bring out the needed material for the test? Would it be advisable to repeat the test at a CF-centre? Many thanks for your answer in advance! Yours sincerely,
28.04.2008
CF is sustected - test probably false-positive?
Hello, our daughter (3 years) has been in hospital since last monday with a severe pneumonia. As the inflammation did not disappear in spite of intensive treatment with antibiotics, a test for CF had been done last monday, too. The result of the sweat test was quite a shock for us because the result was 91 mmol/l. In the first line this result did not mean a thing to us and it was a bit unfortunate as our daughter had been discharged about 2 hours after the result of the test. They only told us that because of that test the suspicion of CF became more likely and that we should come again in 2 weeks in order to carry out a second test. With such a result and without any further information being sent home is of course quite questionable. But to my question: on the one hand we are "used to" some fatal diagnosis concerning our daughter as she had been a preterm baby with severe and life-threatening complications after birth. But on the other hand the result of the test does not make any sense to us, as our daughter does not really show any symptoms, which would be typical for CF (it is my opinion, at the moment our information about this illness is quite poor). When suffering from the pneumonia she was able to expectorate the mucus well without any specific drugs and otherwise she is healthy except the latest pneumonia and has nearly any problems with striking cough. However, she has had a double side pneumothorax after birth, but even because of this she does not have any special complications today. How is the probability that there are sources of error with the result of 91 mmol/l and where are the limits? We have read something about 40, 60 or 90, but do not know what is right however. Is it for example possible that administration of Sodiumchloride intravenously during the stay can influence the result of the test? Additionally, she receives Movicol regularly for about 8 weeks due to the lethargy of the bowel. Is that treatment possibly a source of error that could lead to a wrong positive result of the test? Futhermore I have heard that if the amount of sweat during the test is too small this could lead to mistakes, is that right? Up to now we did not notice that her sweat was salty or something like that, even in the summer she only hardly perspirates. I would be glad to hear your opinion about that.
28.04.2008
Treatment in Kosovo
Hello, My sister in law and her husband have a 3 year-old, healthy daughter. In August 2007 she gave birth to a son who was suffering from CF and died in December 2007. They like to have more children, now my question: Is there a possibility of prenatal diagnostics? Can this be done in Kosovo? Are there medical European networks that could also help persons concerned in Kosovo? Apparently, there are such possibilities in Skopje (Macedonia), but they are supposed to be very expensive. I am looking very forward to hearing from you soon since the couple suffers very much from this situation and has not received clear answers to their questions. Thank you very much for your effort. Best regards,
24.04.2008
Exacerbation
How I can know, that disease exacerbated? What are the symtoms of exacerbation?
24.04.2008
Airway clearance vest
Hello, We have a year-old girl with CF. I read that in the USA they use airway clearance vests to loosen up mucus from airways – see description attached. „The ThAIRapy Vest is a mechanical device which uses high-frequency chest wall oscillation to provide airway clearance therapy. The device consists of an inflatable vest linked to an air-pulsed generator. The air-pulse generator creates pulses within the vest which oscillate the chest wall and create air flow within the lungs. Air flow created by the ThAIRapy Vest dislodges mucus so it can be cleared by coughing.“ Response from CF patients are positive: Easier breathing, fewer infections, shorter sickness. Do they use equipment like this in Europe too? From which age do they recommend it? What does it cost? Is it possible (in the Czech Republic) to apply for a contribution from my health insurer? Thanks in advance for the answer.
23.04.2008
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