Topics

Cannabis
Hello, does Cannabis help in case of CF?
14.05.2014
Air-exhausting systems, what has to be paid attention to
Dear expert team, I move with my daughter (CF, 18 months old) to an appartment, where the bathroom has no window: there is an air-exhausting system (which one exactly, I do unfortunately not know). I have already looked for adequate former questions on the ecorn-cf site, however I could not make really sense of it. Is it true, that the air-exhausting system needs a fungus respectively a bacterial filter? I have read that there should not be a container for condensating water where it quasi recirculates - reportedly the exhausted air is blown to the outside...please give me some feedback, what I have to pay attention to! Many thanks, best regards, M.L.
14.05.2014
Families with several CF people
Hello Are there families with several people with cystic fibrosis ? Thank you
14.05.2014
Sweat test in CF
Hello, we have only in May an appointment for a sweat test. Our son (6 months) has cough since his 5th week of life and wheezing. He weighs 9000 g. With such a weight, is there CF possible at all? Many thanks in advance.
14.05.2014
Stiching in the knee
Hello, I am 39 years old and have CF/diabetes, I would like to know what it is about concerning stiching knee pain and an infection of the lung. Is there any correlation there? I observe this for some years now. I only know that there are some CF patients who suffer from arthritis or rheumatism. Can something like this also develop in CF? Regards, E.
14.05.2014
MRSA because of azithromycin
Dear expert team, I suffer from CF with chronic Pseudomonas aeruginosa colonization. My physician advised me to take azithromycin 250mg daily permanently. I feel a positive effect of this. However I fear, that it comes to a colonization of the lung with MRSA because of this. Is there any data from long-term studies on negative consequences concerning MRSA colonization respectively other negative consequences on the lung? Thank you in advance for your answer. Many greetings!
14.05.2014
mutation
My 9-months-old daughter is homozygous for the c.489+1G>T mutation. Can you tell me more about her form of cystic fibrosis; how much is it widespread and severe? Thank you in advance for your answer.
12.05.2014
CF excluded?
Dear expert team, my daughter is 8 years old, since at least 5 years she has again and again strong bronchitis, now in the last year three times pneumonia. In general, she is very often ill, always with much mucus. Also she has chronic inflammation of the sinuses and also nasal polyps, that have been operated once, however recoccurred fast. She also has at least for five years problems with the digestion, initially often obstipation, now the stool is rather smooth, mushy and somehow oily, shiny, it also swims on the surface in the toilet and it smells very uncomfortably. She is often complaining about stomach ache and has then large volumes of stool. In case she vomits, food comes out partly undigested. She vomits frequently just only mucus, also in the mornings before eating. After that she is fit again, as nothing has happened. She is coughing partly extremely, especially at night. If she is ill, we can control the situation only with codein drops, otherwise she is getting no sleep at all. She is 1.28m high and weighs 24kg. I am 1.72 m high and weigh 65kg, the father 1.85m and 80kg. Unfortunately I did not get a written result of the lung function test to take home, the physician said she is blowing well at the beginning and gets worse and worse, then. With salbutamol it was a bit better, however not satisfying. On the x-ray of the thorax it could be seen, that she already had several inflammations and something could be seen like many white shadows and a kind of ramifications. Unfortunately I cannot write more about this, as I did not get a result. Sweat tests: 1.: 52mmol, 2.: 25 mmol, 3.: 32 mmol, 4.: 33 mmol (the last two had again been done at a CF center) The stool is being investigated for pancreatic elastase I, however, there is no result, yet. A genetic investigation has not been initiated, and apart from that nothing else until now, we are still hanging in the air. Something is wrong with her and I just want to know what’s going on. She is always suffering so much when she is ill, so that I do not let her go to school if many people are ill, as I fear, she is going to get infected. Can I depart now CF with good conscious? She is just showing so typical symptoms. However since she inhales, she is doing better. Best regards,
12.05.2014
Causes of ABPA
Dear expert team, I (CF, 26, female, FEV1 about 65%) would like to ask you for your opinion concerning an ABPA (allergic bronchopulmonary aspergillosis). Already in March 2012 I was suspected to have an ABPA, as the typical antibiotic drugs did not help for the symptoms of an infection, however, cortisone and itraconazole helped. Blood values, sputum and x-ray were however never totally unambiguous. In July 2013 I was able to stop cortisone completely again without any worsening. Now I stayed at relatives in a flat in an old building with humid walls for three nights at the end of December 2013. During the time there, I did not realize a worsening, also because I was still quite fit due to an i.v. therapy four weeks before. Four days after leaving the apartment I started to have again symptoms of an infection with much, however very light sputum, whereby also two members of the family had a cold. As the situation did not improve, I got cefaclor at the CF center at the beginning of January 2014, that however did not really help, either. Only after taking 30mg of cortisone for three days it suddenly got better. In the middle of February stronger cough started again and after another week I got hyperinflation and narrowing in the lung, again with much, however light sputum. It came finally to an acute orthopnea and 12 days of hospital stay with tobramycin, cefuroxim and 50mg cortisone i.v. as well as itraconazole. The sputum showed masses of Staphylococcus aureus, however no Aspergillus, the x-ray of the thorax was not markedly worse and the CRP low. However in the blood there were signs that ABPA played a role, however not really unambiguously. As I would now like to find the reason for the relapse, I would like to know if you would consider a correlation to the stay in the humid apartment in December possible. Should I have noticed a worsening directly in the humid apartment or is it possible that the symptoms occur only after such a long period of time? In my own apartment I checked the humidity of the air in all rooms and it is about 50%, what is normal according to my research and the formation of mould fungi would reportedly only occur over 60% air humidity. To be on the safe side I got rid of all potted flowers that need much water. Are cactuses, that only get water once a week and are otherwise dry also a source of danger? Should I have checked or avoid anything else inside or outside of the apartment? I take the garbage outside always immediately. How does oneself react most reasonably in a situation of acute dyspnea, that has been caused by ABPA? Can one do anything else rather than sitting upright? Are there any drugs or sprays that one could take? Salbutmol as a spray did unfortunately not have any effect. Many thanks in advance, Best regards, S.
12.05.2014
Amlexanox
Dear expert team, I got aware of the following publications: http://www.ncbi.nlm.nih.gov/m/pubmed/22938201/ and http://www.google.com/patents/EP2437741A1?cl=en I would like to know if there is any data yet concerning the correction of CF nonsense mutations? Respectively, if there are any clinical studies, yet? A patent seems to have been requested at least. As this substance is used for more than 20 years in humans, could one expect a quick market authorization in case of proven efficacy for nonsense mutations in CF? Our daughter has i.a. the R553X mutation. Many thanks and best regards!
12.05.2014
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