Topics

Emergency: Rare Disease Personal Card
Hello, My daughter has CF. She has got an accident and was referred to the hospital by an ambulance. Fortunately conscious, she was able to direct the hospital staff especially concerning an injection of morphine. Can you tell us if there is a formal document available to doctors in case of accident with loss of consciousness ? My daughter refuses to remain hospitalized for further tests for fear that they provide not recommended care for her pathology. Who can do this kind of document that she would keep close to be reassured? People around her were helpless about this situation. The accident is not related to her illness. Thank you for kindly informing us. Sincerely.
13.09.2015
Drinks
Hello, As a Mom of a CF girl, I would like precisions on drinks. Indeed, we were always told to give her of the bottled water only 24 hours after opening. Is it the same for milk and fruit juices? Thank you in advance for your answer.
13.09.2015
Viral infection- Pseudomonas
Hello, How can it be explained, that in case of a cystic fibrosis patient (a toddler) a harmless viral infection can cause every time a pseudomonas colonization? Till now, the pseudomonas could be eradicated every time; but as the next viral infection followed, the pseudomonas could be proved again in the routine smear. Is the mucosa more vulnerable for pseudomonas during a viral infection? Or is it just explained because of the increased mucus? Observing such a regular relation between a viral infection and pseudomonas colonization, is it reasonable to treat such a viral infection immediately with an antibiotic (Ciprobay®?) in the beginning, in order to have a prophylaxis against pseudomonas? How are the current guidelines for a pseudomonas eradication (not mucoid, pseudomonas antibody negative)? Thank you very much!
13.09.2015
Paranasal sinuses
Hello, When a child with cystic fibrosis has a “blocked nose” for 2 weeks, and the secretion is just liquefied through inhalation with MucoClear®; should one then begin with an antibiotic treatment in order to prevent a bacterial infection of the paranasal sinuses? Is this also true if there isn’t any infection of the bronchi and the lungs? I mean if there is just a persistent flue for 2 weeks, without any fever, cough, or any other symptoms. Or can we just wait, until (if) fever, cough or any other symptoms occur? Thank you for your assessment.
13.09.2015
Prenatal diagnosis
Hello, We have a 5 year-old daughter who was diagnosed with cystic fibrosis at the age of 4 months. Since this day we have been in safe hands in terms of medical and physiotherapeutic care. Our daughter is fine, till today she has not had any evidence of problematic germs. We have our therapy and she can lead an ordinary life with kindergarten etc. The issue of a further child was never really defined for us. A PID (preimplantation diagnostics) is definitely excluded for us, and now I am pregnant again. We are well informed about cystic fibrosis and know the risk of 25% of its inheritance. Now, I am in the 7th week of pregnancy and we are wondering if we should have a special examination like chorionic villus sampling or amniocentesis done. Even with a positive result of cystic fibrosis we would decide to keep the baby. To me it is just a question of certainty, whether the baby has cystic fibrosis or not. Can one prepare oneself for this better in the clinic? How high is the risk of these interventions? And especially can one do anything immediately after the birth that has a positive effect on the progress? I would be very thankful for your assessment. Greetings
13.09.2015
Long term antibiotic treatment Cefuroxim
Dear experts, I am an adult cystic fibrosis patient (> 45 years old). Currently I am taking Zithromax® (Azithromycin) 250mg as a long term antibiotic treatment every two days. Furthermore, I inhale Pulmozyme® and Colistin®. I have problems with sinusitis. Polyps are excluded. The last testings of the sputum and nasal secretion showed a resistance to Zithromax® every time. This often leads to an acute infection, and then another antibiotic has to be used, according to test results. My consulting ENT specialist wanted to try a long term antibiotic therapy with Cefuroxim, because it is sensitive till now. But the cystic fibrosis clinic said that this is not common. There are just experiences with Azithromycin, but I read in a forum about a case where a a long term antibiotic therapy with Cefuroxim was made. For one year [as it reads in the forum] the patient has had hardly any infections and no problems with the paranasal sinuses. She found it totally awesome. My question: Could Cefuroxim be used for a long term antibiotic treatment with a lower dose? Regards, S.
13.09.2015
Perenterol® or other probiotics on the prescription?
[original question & answer come from the German platform] Hello, I have just started a long-term antibiotic treatment with Zithromax® (Azithromycin), in addition to an interval therapy with Cotrim® (Cotrimoxazole): intake for 10 days, pause for 4 weeks. That is really stressing my intestinal tract, so my physician has prescribed Perenterol® (containing the yeast Sacharomyces cerevisiae), but the arising costs are just covered for minors, like the pharmacist said. Are there any exceptional rules for cystic fibrosis or long term antibiotics? Are there any alternatives? I cannot afford this medicine on my own, but unfortunately I am already suffering of the side-effects like flatulence and diarrhea. Thank you.
13.09.2015
Testing of baby when CF is diagnosed
Dear experts, My daughter (11 weeks old), was born on the 5th May 2015 with an intestinal obstruction. After three weeks the result of the genetic testing arrived: positive (cystic fibrosis). The CF center decided it was necessary to take Kreon© (pancreatin) for kids and to inhale solution of sodium chloride (3%). The lungs are okay and she gains weight. In addition to this (I requested this on my own) after the next visit there will be sent a stool sample into the laboratory in order to investigate whether there is a residual pancreatic function. There has not been done yet anything more. My question: Since when and in which intervals the swabs have to be taken? I read that in 30% of the babies in the first years, the germ Staphylococcus aureus is detected and moreover 30% have this germ already after their birth. My baby is just 11 weeks old, and that is why I just wanted to know whether one can exclude this germ? How safe is it? In the question of March 2015 (page 6) I have read that the clinic sends even sputum into the laboratory for checking purposes. (baby inhales the solution of sodium chloride and as it coughs, the sputum is sucked). The baby hasn’t even had any symptoms…; however the germ was detected and thus, it could be treated immediately. What will happen if my daughter has the germ without showing any symptoms? And therefore no investigation is made?
12.09.2015
Possibility of CF
My son is 7 years old, has chronic cough and does not gain weight easily (he weighs 20 kg and is 119 cm tall). Can we as parents check if he has CF? I was told that if I taste his sweat I will find out. My son’s sweat is not that salty. I have visited a paediatric pneumunologist in Thessaloniki. He told that my son does not appear to have CF, and that at such an age it would show! I still worry though.
12.09.2015
Hello
In my life there are quite some setbacks. As a child I suffered from recurrent infections, pneumonias, bronchitis, tonsillitis. Always one was followed by the other. With 14 the sinusitis began, that did not disappear until now at the age of 35. I have had also liver problems and a pressure feeling. Since I do a gluten-free nutrition, this improved however. Every morning, however, I have sputum with viscous secretions looking like a fluid. I cannot run, I could never blow up a pool. Also I have heart problems: I cannot image to suffer from CF, it would have been without treatment for 35 years - is such a thing possible?
12.09.2015
<<  < 55 | 56 | 57 | 58 | 59 | 60 | 61 | 62 | 63 | 64 | 65 | 66 | 67  ...  342 >  >>