Topics

How dangerous is hairspray?
Hello, due to current happenings I am a bit worried, concerning the accidental inhalation of hairspray. Can this be especially dangerous for a CF patient, to inhale these poision- (and glu-) substances once/more often?
27.02.2016
Dental implants or dental bridges
Dear expert team, I am a CF patient, 50 years old, with normal lung function (FEV1 about 80%), with Pseudomonas and normal weight and have a diabetes for 15 years. Should I rather decide for an dental implant or dental bridge regarding diabetes and CF? Many thanks for your help and a happy new year, F.
09.02.2016
Pseudomonas at the beach
Hello, Are there any studies about the contamination of beaches of different European coast regions with Pseudomonas? Is, for example, the beach at the North Sea less contaminated with Pseudomonas than a Mediterranean or an Atlantic beach? We ask this, because we want to have the lowest possible risk when planning future holidays at the beach with a CF child... Many thanks for your help!
09.02.2016
Fracture of the humerus with osteoporosis (lung transplanted)
[11.01.16 - addendum: on request we got the information: "Dear expert team, I am 51 years old and suffer from CF. Many tanks for the answer to my question. Regards, R. ] Dear expert team, 12 weeks ago, I got an subcapital fracture of the humerus. Now the radiologist stated, that I have a reduced calcium content of the bones. I take bisphosphonates for years (alendronic acid 70mg) once a week, calcium 1000mg daily, active vitamin D (Dekristol 20.00 I.E.) twice a week, magnesium (150mg 5 capsules a day) orally. Before the fracture, I did sports regularly and moved a lot in daily life. My vitamin and mineral levels in the blood are checked regularly, dosages if necessary are apted if the values have changed. Is there any other therapy known to you, that could stimulate the growth of the bones positively (especially after lung transplantation)? It has been recommended to me to do a diagnostic ultrasound treatment. Furthermore, I got the recommendation to take golden minerals of "Self Health" (colloidal effect, therefore better uptake via the gut assumed) for 4 weeks. Also a therapy ith Symphitum in the potency D200 - globuli at first daily for 2 weeks, then for further 4 weeks once a week is planned. After homeopathic substances are used with great caution in case of transplanted patients, I am very insecure concerning the intake of the above mentioned substances. Many thanks for your help. Best regards from R.
07.02.2016
Hypertonic saline and NaCl
Hello, I came across the following article via the internet...http://m.aerzteblatt.de/news/50259.htm [article in German] What do you think about the statement concerning the assumed ineffecitveness of hypertonic saline and NaCl inhalation in case of CF children? Best regards!
07.02.2016
Medical checkup over the age of 50
Hello dear expert team, I am 51 years old and suffer from CF. I received an information about a medical checkup from the insurance for men over the age of 50. I.a. an endoscopy of the bowel was proposed to be done every 2 years. I am very insecure. In healthy people such a checkup makes sense to me, however with CF? Openly speaking the risk seems to be too high for me to get additional complications during the endoscopy via often observed possible injuries of the gut mucosa. A collegue of mine, who had such an endoscopy done, had to stay for weeks at hospital, got an MRSA and was even on intensive care unit. What is your opinion? Many greetings F.
07.02.2016
physiotherapy
Hello, my daughter, aged 10 months, is Lebanese, she has CF. She was detected at her birth because of a bowel obstruction. Her pediatrician didn't priscribe physiotherapy, just vitamines. When she was 8 months old, she has an ECBC, she has pseudomonas in her suputum. Then she had antibiotic by IV and a PAC. After her stay in hospital, we started chest physiotherapy, 3 times a week but only 5 minutes. My question is: is it enought 3 times a week only 5 minutes? The physiotherapyst told me that it was enough for her Ii can't learn to do it by myself because I could breack her diaphragm. I want to know if I am doing the right thing? If I learn to do it how much time must I do it? My daughter cries every time she does physiotherapy. Thank you very much
01.02.2016
Chest Physiotherapist
Hello, My son, a 2-year-old boy, is seen in a CF center which doesn't give the same instruction as the others. In fact, my boy is DeltaF508, he has chest and digestive problems. He doesn't spit any suputum since he was born and he was perfectly well. He does one chest physiotherapy every 2 weeks only. It a short session and nothing comes out. I think it's not enough. My CF center says he doesn't need more but when I talk with parents from another CF center, I notice that the other kid does more chest physiotherapy. I'm scared not doing the right thing. What do you think? Why such differences? Thank you
01.02.2016
Aerosol of physiological saline solution
Hello, Our son, aged 14 months, has never productive cough. He does 3 physio sessions per week during which he never spits anything. Is it useful to try saline aerosol before the physio sessions to fluidize the suputum? Thank you
01.02.2016
Research
Hello, May I ask you whether regarding the current level of research (+ 1900 identified mutations and the importance of modifier genes) a study on the mutation and modifier genes that parents passed, would not be a source of useful information for the development of a treatment adapted to the patient? In other words, what is that despite being carrier, they have not developed the disease? Thank you for your response.
01.02.2016
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