Topics

Regular i.v. therapy?
Hello, my son is 6 years old and has the Pseudomonas already for about 4 years. In the year 2012, 2 i.v. therapies had been done, as he did not well either. This year he has stayed free of infections and has no restrictions. The Pseudomonas has not beed detected anymore in the throat swab, either. For control reasons, the antibody titer has again been tested. This is however higher than before the i.v. therapies last year. Now we got differing statements concerning the i.v. therapy. We have been told, that the Pseudmonas is chronic and the i.v. courses have to be repeated regularly. Another time we have been told, that we will wait, as he is doing well at the moment. What is better? Furthermore, I would like to know which investigations would make sense? My son has never had a CT or MRI, only normal x-ray investigations. I have heard several times that this would be standard. I would be very glad about an answer. Yours sincerely,
11.12.2013
footbath
Hello, I noticed that in response to a question about pools you recommend avoiding the footbath. Could you tell me more? Can my CF child rinse his feet when he leaves the pool in the footbath, were there is a product (I guess disinfectant) to prevent warts? What should really be avoided when going to the pool? It's a boy, he has short hair, is it dangerous to use the hair dryer ? A big thank you in advance for your answers and for all the time you spend for us. Yours
11.12.2013
climbing indoor
Hello, My 7-year-old daughter would like to practise climbing. We went in a room to learn it and we noticed that the air was full of magnesia. The air is renewed every night but the magnesia is very volatile and there remains always on the grips. I did not find information about the possible impact of the magnesia for a patient with cystic fibrosis and the question was apparently never asked on ECORN. Do you think that the practice of the indoor climbing is possible? Thank you in advance for your answer
10.12.2013
Milk and milk derivatives
Hello, for a child with high sputum production, is it better to avoid or to forbid cow's milk and its derivatives (cheese - yogurt). I've heard that it promotes the production of mucus. Thank you for your reply
09.12.2013
Cystic Fibrosis
Hello, after a pancreatitis, my 10- year-old son has been diagnosed with cystic fibrosis. He never had bronchitis. Sweat tests values are 55 and 50. The N1303K mutation was identified. His lungs, will they necessarily be damaged? Can people live with pancreatic insufficiency? Thank you very much for your information. K.
09.12.2013
Daily colored sputum
Hello, my 5 year old son has colored sputum (green - yellow) daily. Is it due to chronic colonization by staph? He takes Pulmozyme® daily and has respiratory physiotherapy every day also. He has daily sputum that we are trying to evacuate every day. Does this mucus affect his lungs? Even after antibiotic treatment, it's always coming back. What can we do to help him more? Thank you for your reply.
09.12.2013
Tendinitis and Tavanic®/Ciflox®
Hello, I'm a 33 years old CF patient. Since August, I react to Tavanic® (levofloxacin) by tendinitis pain under the foot arch. My intravenous treatments are very infrequent (1 every 2 years). My doctor told me that if I can not support Tavanic®, we will have to consider much more frequent intravenous treatments. My question: is it possible to continue the Tavanic® treatment despite tendinitis if it is bearable and does not necessarily lead to rupture of a tendon? I'm afraid a very trench response of my doctor: maybe he would not want to take any risk because I am the only patient to have these symptoms ... I would like to share experience on this point. Thank you in advance.
09.12.2013
Well-being and food
Hello, I'm currently a dietetics student ("BTS") and I have to accomplish a personal study. Awared by TV spots and by a first research during my senior year, I have chosen Cystic Fibrosis for my subject of study. I would like to know if food has an impact on the well-being of CF people? Thank you.
09.12.2013
Strap
Hello, Could you tell me if the use of a strap for physical therapy sessions is essential? Just recommended? Or not at all important? In which cases do you use it and for what purpose? It has never been proposed to my granddaughter who is 4 years old! Thank you for your reply.
09.12.2013
29 years old CF patient
I am from Romania and I have a 29 years old son with CF, which was diagnosed late... when he was 24 (genetic mutation-milder form= G85E; R347P and sweat test= 110) In childhood he was diagnosed with a syndrome malabsorption. At age 12 he already had sinusitis and nutrition problems, dry cough.. In Bucharest I consulted over the years, medical specialists: Otorhinolaryngology, nutrition, pulmonary, who have treated each disease on his specialty... In this moment he is under observation and treatment of a doctor specialist in CF from Bucharest with medical tests regularly at 3 months, and he takes proper medications (Kreon, Pulmozyme®, Seretide®, gentamicin/ colistin in aerosols, vitamins, omeprazol) I wish to find another medical opinion (I know at this momment, no cure found in this disease, yet!) but I would like to find what treatment options currently exist in THERAPY OF CF IN ADULTS Can you please advice me if there is any clinic or hospital specialized in the treatment of CF for adults especially, with good experts where my son can be checked .. in Europe or other places? I am looking forword for your answer,
09.12.2013
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