Topics

Crispr Cas 9
Hello, unfortunately our two daughters (7 years and 7 months) suffer from CF. We are in very good care and both girls are fit and stable. Some days ago my physician wanted to know something about the health status of our girls. He mentioned also Crispr Cas and was interested in how far the actual state of research is concerning CF. I had alreday heard about it, however did not pay too much attention to the topic (ethics, no information on usage in the media, no reports, no information from the CF physicians of our daughters)... My physician, however, has a different opinion on it. Due to a missing intervention into stem cells, therefore the genetic material of a human being, this method would not fall under the ethic law. Only mutated DNA sequences would be "cutted out". Especially in case of herited diseases he regards this genetic scissors to be promising. However this seems to be very sensibel, if there are not yet any irreparrable damages (that means in case of CF e.g. of the lungs). I now read about Ulm (city in Germany), however a real Status Quo I could not find. How is your state of knowledge here concerning the usage of the genetic scissors, chances? We of course do not want to miss anything in case of our girls. Many thanks for your answer.
03.04.2017
Sweat test and diagnostic algorithm
Hello dear team, there are patients who had a negative sweat test and diagnostic algorithm, however the function of the pancreas is not given anymore and the course of the illness is like in CF patients. Pneumonias, infections, etc. Both of my children are in the meantime 27 and 28 years old, however acutally these investigations had been done to one of them and showed, that the chloride channel was functioning. However all other symptoms favour CF. I am a bit irritated with the diagnosis of CF after such a long time. We have been told, that it could not be CF. Many thanks for your help.
03.04.2017
Sodium- and chloride values not clear
Our 16-year-old daughter had a sweat test done, because her height is only 1.48 cm (I myself have only 1.56cm height). The sodium value was 68 and the chloride value 39. We have had these values alreday for the second time. She however does not have any symptoms, in spite of panic attacks with dyspnea from time to time. Half a year ago, the pancreas has been investigated, the values were super. And x-ray of the lung had been done and this was not suspicious, they said that this however has no meaning. Are there other reasons why these values are increased? The physicians do not seem to be too worried, however, me and my daughter, we are! Best regards,
03.04.2017
Snoring nose
Hello I am the mother of a 2- months-old child, very worried; He has a persistent and severe pneumopathy at 1 month (following a rhinitis). His neonatal test is negative. He is followed by a pneumopaediatrician who had prescribed him a entoline and singulair and pulmicort treatment in the long court. Then as my son had no recurrence despite a therapeutic window, he stopped the treatments. Everything was OK until December. My son has a nasopharyngitis and since my son has a nose that snores every morning and sometimes in the evening at bedtime (he spends a good night) and he coughs to clear his throat after the baby bottles in the morning. I therefore consulted an ENT who found that his nasal mucosa was a little inflammed but no worries level ears or vegetations according to his pediatrician. The auscultation of the bronchi is dry and perfect but I find that since December without interruption it's nevertheless a too long time! I specify that his nose flows through the throat and that the secretions are translucent. He has no fever. I read on the web that chronic rhinosinusitis could be the symptom of cystic fibrosis: is this possible? How is the symptoms of an ENT disorder present in CF patients ? Thank you for all your answers Best regards
17.03.2017
Physiological serum
Hello, If physiological serum (0,9% NaCl) is used in a 500 ml flask for sinus washing, how long can it be conserved? How much per side is to use for a wash? Thank you
17.03.2017
Breathlessness during intravenous treatment
Hello As soon as I am on an intravenous antibiotic treatment iwth Ceftazidim and Cotrimoxazole orally, I am very breathless while without treatment I am not. Do you know if it's because of antibiotics? Thank you
17.03.2017
Blood exams
Hello, Our CF 20-month-old son had several blood tests. For several months (approximately one year), platelets are elevated (700-800G) as well as white blood cells (more specifically lymphocytes: 10G). Can you explain us what it means? What is the impact on the prognostic level? Thank you, cordially
17.03.2017
Disease post transplantation
Hello, In a transplant patient, the transplanted tissue is healthy but it remains the genetic anomaly, so can the disease again damage his "new" lungs in the long term? Thank you
17.03.2017
White secretions
Hello My 20-month-old baby has an inflammation of the nasal mucosa since December. His nose secretions only flow in his throat and do not come through his nose. On the advice of my pharmacist, I gave him a cure with "actisulfur"and the mucus came out white, whereas when I washed his nose essentially to the physiological serum, there was little or no secretions but it remained transparent. What is the significance of these white secretions? Is it the actisulfur that colors the mucus? cordially
17.03.2017
Practical year medicine in case of CF
My son is 24 years old and studies (with empathy) medicine. In summer he will do his second state exam. His health status is relatively stable, on the other hand he is getting easliy ill in case of a high physical burden. He is actually very afarid of the practical year, especially concerning the part in internal medicine. He is especially afraid of the germ load, there. After the practical year he wants to do his specialization in any case in psychiatry, in order to avoid the health risk as far as possbile. My question is: how are the chances for a CF patient to find a place in internal medicine, where he can be relatively sure, that he does’t get new germs? Are there any possibilities here to find a „special program“ for CF patients? Where can he turn to in order to find this out?
17.03.2017
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