Topics

Mosquitoes
Hello, Following recent floods, including Ile De France, the mosquito population will increase. What are the risks for CF people, especially babies? Cordially.
04.07.2016
Mycobacterium intracellulare in the CF sputum
Hello dear expert team, in my sputum (I am nearly 30 years old) Mycobactrium intracellulare has been detected last December for the first time. Since then this bacterium could be found in 2 further tests, so that I can assume a chronic infection. As I have been at another CF Center before and to my knowledge those mycobacterial investigations have never been done there, I assume, that I have this bacterium already for a longer time. As I am doing very well (FEV1 is at the moment between 84-88% and is unchanged) and as I can do a lot of sports without problems (mountain sport: ski tours, climbing, running, mountain biking…) and I have no complaints, I ask me and you the question, if I should have the Mycobacterium treated at all? The treatment would last for months respectively years and would bring side effects with it. Wouldn’t it be like this that after at least 4 or 5 months an infection with this bacterium would have lead to a deterioration of the lung function respectively other symptoms would have occurred? I would be very pleased about an answer. Best regards, A female CF patient
04.07.2016
Mutations F508del and R553X
Dear expert team, Our son has been diagnosed to suffer from CF at the beginning of January at the age of 9 weeks, after we had been admitted to hospital with a hemoglobin value of 6. The little boy became 2 blood transfusions and takes zinc tablets since then, as he also had a zinc deficiency. The poor gain of weight (only 3500 grams at the age of 8 weeks with a birth weight of 2900 grams) has not been taken for serious from the pediatricians. The sweat test value was 90 and had been confirmed with 84. We have been discharged with Kreon, zinc tablets, double dosage of D3 and the wish to visit once a week a physiotherapist. At a further appointment, genetic testing had been done. The mutations F508del and R553X came out. Now my question about this. You answered in 2012, that with that combination the involvement of the lung until about the 12th year of life would be less compared to the homozygous form with F508del. Is this still correct? Our CF center mentioned the drug Ataluren to be at the horizon. Do you really think that it will still be licensed after so many years for the usage in case of CF? One can read in the Internet, that in case of 2 different mutations, always the milder one determines the picture of the illness. Is this correct? If yes, Ataluren would not help us further. Before easter he had again been in hospital with an alkalosis. We have been told that this would mostly be due to the infection, as our son had vomited markedly some days before. As this had been 1-3 times a day and he had directly been breast fed afterwards, in order to compensate the loss, we can only hardly imagine this. What is your opinion about this? We have only been advised to start with feeding purree once a day and to add a bit of salt. Additionally, our son had strong cough and rhinitis. Due to the cough and the fear to get a pneumonia we had only gone to the hospital. During this stay in hospital, the next visit in the CF center was planned to be. After we questioned it, we got yesterday now our inhalation device. We ask ourselves by now, if we are well cared for in this center. One reads about other patients, that they start inhalation directly and should do daily physiotherapy at home. A recommendation for inhalation has not yet been made concretely. How is this done in your center? Many thanks in advance for your help, Yours sincerely, Mit freundlichen Grüßen, V.S. mother oft he child
24.06.2016
Neglect of therapy by one parent
Dear expert team, I have the problem, that my former partner and father of my children neglects strongly the CF therapy and hygiene rules and my CF son has frequently infections after having visited his father. The actual infection (after 2 visits of a swimming pool with strong undercooling) is endangering a planned operation and a rehabilitation afterwards. Direct communication is not functioning. To the question, what has happened, the answer followed.:“the fever would be psychological”. In former days, the father (engineer) cared a lot for his son and took therapy for serious. That means one could assume, that he is involved in the topic, as we have the last 3 years managed it together. In the meantime, he is taking it not for serious, partly does not give Kreon….I just do not know anymore what to do, because for me, it is turning more and more in endangering the health of the child, however I do not want to risk the father-son relationship. What could I do, who could I involve, in order to sensitize him for the topic? I would be pleased about a recommendation from your side. Best regards,
24.06.2016
GLPG1837 Galapagos clinical trial
Hello A clinical trial with the CFTR protein potentiator GLPG1837 (Galapagos) has just started. Obviously this molecule is for patients carrying a class III mutation. Is the clinical trial ongoing in France? When will results be available? If compared to Kalydeco® could this new molecule present additional interest? Thank you for our reply
20.06.2016
Contraception
Hello, I am carrying the F508del, I am 21 years old I am diabetic and I have a thyroid dysfunction (hypo) and I take the pill "leeloo®". I saw several articles on the need to focus most heavily dosed ethinylestradiol pills. Concrening CF articles I see the opposite. What is that about? In addition is there a risk of inefficiency of the combined pill when taken with other antibiotics (amoxicillin + clavulanic acid, ciprofloxacin, trimethoprim)? Thank you in advance cordially
20.06.2016
Sweat test and elastase activity and genetic is negative
Hello, I have a daughter who is 6 years old and another girl who is 4 years old. The 6-year-old girl has chronic constipation and two hernias (one in the inguinal area and the other in the abdomen). She is growing slowly. The little girl of 4 years had some rectal prolapses. Her sweat test and elastase activity and genetic investigation are negative. Normal weight, however she is not tall. Normal mucus and infections of the airways. Are you of the opinion that we should have investigated more? Thank you.
20.06.2016
CF???
Hello, I am worried abou my 15-months-old daughter. She is coughing since the middle of January. Sometimes with fever and sometimes without. Nothing seems to help (she is inhaling cortisone…ambroxol…cough syrups…)I have been with her to the pediatrician…in hospital…general practitioner…pneumologist..they say always that it would be an infection that will go away in 2-3 weeks – this is however not the case. ..she has a lot of mucus…if she has a coughing period, she is even vomiting and gets dyspnea. This was about the cough. Furthermore, she is from the beginning on sweating a lot and then smells like vinegar. She is also tasting salty. Since the cough started, her stools have also changed. Mostly constipation and then comes a portion of stool that smells awfully and is like diarrhea. She is 83cm tall and weighs 12 kg. I would like to have a sweat test done – however today my general practitioner did not want to give me a prescription. I would have to go tomorrow to the pediatrician he said. Could here be CF underlying? [Translators comment: later came the following additional information:] Today a sweat test has been done at a CF center, this was normal with 22, the doctor said I would not have to worry....
20.06.2016
Water from the tap
My daughter has CF. She wants to use the water from the tap. Would this be possible if she uses a waterfilter? Best regards,
20.06.2016
White margin of sweat in case of sweating
Hello, I have the following question: It strikes to me, that my son (16 months old) has a white margin of sweat from sweating in case he had his dark hood on while sleeping for a long time in the buggy, just in the shape of his head. The margin also tastes salty. It did not strike to me until now, even not in the dark car seat. He is rather gentle with this 16 months (10kg, 85cm) but he eats not too much; he had sometimes rhinitis and cough, that was always productive and could be coughed up easily. The newborn screening was also negative. Should one in this case make a sweat test to be sure? Many thanks.
20.06.2016
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