Topics

Late detection
Hello, My brother has been found to have cystic fibrosis. He is 48 years old. He seems to have a liver problem with a high value of gamma GT. Is this possible? What is his life expectancy? Is there a cure? Where can he be well be treated (he lives near Lorient in Brittany)? Should we be tested (siblings, our children, his children ...)?
02.05.2012
Frequent stomach ache (underbelly)
Hello, my daughter (12 years old, CF) keeps having stomach aches in the underbelly, at times severe. She has the feeling that the stool “pushes” and that she has to go to the toilet repeatedly, although the pain rather gets worse afterwards. Quiet, distraction with positive things (e.g. listening to music) and a hot-water bottle sometimes help. However, we would like to know the cause of this pain and whether one can do anything to prevent/treat it. A stool test for candida (among other things) was negative, and the occurrence of the pain cannot be linked to certain food products or wrong dosage of Creon. Thank you for your help and kind regards!
02.05.2012
Antibiotics
Can antibiotics that are administered in form of an infusion be replaced by intravenously injected shots?
02.05.2012
Menopause and hormone replacement therapy in CF
Hello, Which modifications of the disease can menopause cause (I am 53 years old)? Would a hormone replacement therapy have positive or negative effects?
02.05.2012
Different sweat test results?
Hello, I am writing concerning my four-year-old son, who was born prematurely in the 30th week of pregnancy and has had recurring infections of the bronchia ever since. He has also had pneumonia three times so far. Until now, he has always been treated for chronic bronchitis. For further diagnostics, he had a sweat test done; the value was 84mmol. After that, his tonsils were made smaller, since he had so-called Kiss tonsils which were very big. We were sent to a CF clinic where he had a second sweat test done today. The result was 16mmol!! The doctor said the CF clinic had the “safer” test since it would measure the chloride directly and that the first test was surely measured differently. We should trust the current result. Of course we are relieved, but the pathology over the past years still leaves us uncertain, since there will be no targeted therapy again but the paediatrician will keep prescribing broad-spectrum antibiotics. How safe would it be to have a gene test done now, and where can we do it? How can such a significant difference in the values come about? I would appreciate a brief statement from you. Kind regards.
02.05.2012
cystic fibrosis: cat and transplantation
Hello, I am recently living in a flat with my cystic fibrosis and 3 years ago transplanted husband. We want to acquire a cat and I would like to know if it is dangerous for his health.
02.05.2012
Colistin and e-Flow rapid or PariBoy SX ?
Hello, What is the best device for colistin nebulization ? E-Flow rapid or PariBoy SX ? Maybe you can suggest other nebulizers. Thanks for your response, R.
02.05.2012
How to react to an inexplicable decline in lung function?
Dear expert team, I am 24 years old and have CF. As a basic therapy, I have been inhaling colistin, salbutamol, Atrovent® (ipratropium bromide), saline solution 5.85% and Viani mite® (fluticasone/salmeterol) long-term. In addition, I take azithomycin orally, 3x500mg per week. My diabetes is under control, and there are no problems with the pancreas either. Since September, my FEV1 has declined continuously from 66% to currently 50%; the MEF25 is now at 8-10%. I have since had significantly more sputum, though mostly rather light-coloured. As soon as I do not inhale for 6-8 hours, breathing becomes harder and you can hear distinct breathing sounds in all variations even without a stethoscope. Neither an i.v. therapy with cefuroxime or tobramycin in October, nor a switch to cotrimoxazole orally in December could stop this development; actually, the latter made it even worse. I have not had a noticeable infection since September, however; the last cold dates back about a year. The sputum currently only shows increased staphylococcus counts, of which I have had large quantities almost always since I was a baby, though. Pseudomonas is not traceable. My CRP usually, and currently as well, does not yield pathological findings. Other blood values such as IgE, etc. are okay. At the moment, we are thinking about another i.v. therapy with ceftadizime and tobramycin or ciprofloxacin orally. However, I wonder whether this makes sense at all if the CRP is negative and there are not really any relevant germs. Do you consider an i.v. therapy or an oral antibiotic sensible in this situation? Do you happen to have any other ideas as to where this decline could come from and what one could do about it? Many thanks in advance! Kind regards.
24.04.2012
Troubles in the nasal area
Dear expert team, Our 3-year-old daughter has had strong infections of the upper and lower airways from October 2011 (when child care started) until January 2012. All infections were treated with antibiotics. At the beginning of December 2011 (permanent) grommets were inserted. We were told that the removed secretion did not look different from those of other children. No information about bacterial colonisation was given. At the beginning of 2012 her condition was improving and she did not need antibiotics anymore but now the appearance of yellow/green mucus in the nose is increasing. Two days ago we went to the Otolaryngologist (ENT specialist) for the follow-up examination of the grommets. The physician diagnosed increased production of mucus; she did not see purulent nasal discharge or growth though. We asked what kind of preventing or alleviating measures we could take but she only said we should go to a medical supply store and ask there. The next follow-up visit is supposed to take place in 14 days. With regard to the airways the current therapy is as follows: In the morning: Pari Junior Boy® baby mask or mouthpiece, 4ml NaCl 3% + 3 drops Salbutamol; 2,5ml Ambroxol In the afternoon: e-Flow mouthpiece, 5ml NaCl 0,9% + 3 drops Salbutamol; 2,5ml Ambroxol In the evening: Nebula RhinoWash (we bought and tried it on our own initiative) with 10ml NaCl 0,9%; Pari Junior Boy® baby mask or mouthpiece, 4ml NaCl 3% + 3 drops Salbutamol; 2,5ml Ambroxol At night: As required Our question: What can we do to finally stop the infection in the upper airways? Would it be recommended to have a nasal mucus test (swab) done to find out more about the bacterial colonisation? Are there particular measures that can support specifically the elimination of germs in the nasal area? From which age is it recommended to use Cortisol and/or Pari Sinus? We are concerned that an ongoing infection will have negative effects on the lungs again and we would like to avoid this. Many thanks in advance. Best regards
24.04.2012
Vitamin D and vitamin A substitution
My vitamin D value is 40ng/ml, I take 1000 I.U. cholecalciferol daily. The normal range for vitamin D is up to 100ng/ml; should I aim for a higher value? My vitamin A value is 39µg/dl, normal range 30-70 µg/dl, should I supplement vitamin A?
24.04.2012
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