Topics

Delta F508 effective 2015
Hello, my 12-year-old daughter suffers from the above mentioned mutation. I have heard, that there is a drug available in the course of this year. Is it true and how does it act? Thank you
04.06.2015
Enzymes
Hello, I am an adult CF patient. The lung problems have always been not too severe, but I have always had problems with digestion, that manifest in an always severely distended abdomen. Now I have, since the beginning of the year, just left out the enzyme substitution completely (before about 2000 IU/g fat) and the problems have disappeared. The weight is constant, rather increasing and the stool is normal. New is however a nightly sickness, that occurs mostly at the same time. Does anything speak against going on with leaving out of the Kreon? Many thanks in advance.
04.06.2015
Induced sputum in baby (with additional comment)
Dear expert team, my daughter (7 weeks old) has been diagnosed to suffer from CF because of a positive newborn screening. She has no symptoms until now. In the coming week, further diagnostic is done and the beginning of a therapy during a stay on the ward. I have been told, that every 4 weeks an induced sputum has to be gained for microbiological investigation. My question is: is it really necessary in such a young child to have this quite stressing investigation done every 4 weeks? Would greater time intervals respecitvely the performance of throat swabs lead to a worsening of the prognosis ? Thank you! V.S.
04.06.2015
Disinfectants for little children
Dear expert team, my son (14 months old, CF) starts to find it's feet and is in the investigator's phase. Because of this, he is taking everything in his hands and unfortunately also in his mouth. As we are often in the forest, I am looking for a hand disinfectant, that can already be used in little children, in case one cannot wash the hands. Most of the available preparations are only licensed for children older than 3 years. While doing my research, I found a preparation that contains only water and hypochloric acid (HCIO, containing chlorine 10-30PPM) and should kill 99,9% of all bacteria without application time. It is said to be used even for baby hands, suckers and bottles. Unfortunately I am not a chemist and have not any knowledge of those things, that is why I am a bit sceptical. That chlorine kills germs, seems clear to me, as it is yet also used in swimming-pools, but what about hypochloric acid? Is that really acting and is it indeed not harmful? Would you, if necessary, have an alternative for me, that can already be used in little children, who have constantly their hands in their mouth? I would be happy to get your advice! Bedst regards, L.B.
04.06.2015
Bone marrow donor
Could people with CF become bone marrow donors?
16.05.2015
Fishing
Hello My CF daughter would like to fish with her dad at the edge of a pond. Is it possible ? What precautions to take? Thank you
16.05.2015
blood type and cystic fibrosis
Hello It seems depending on our blood type, that we are less or more resistant regarding some virus, some bacteria. Could you please tell me if researches are performed concerning blood type and immunity in CF patients?
16.05.2015
G551D/S549R Kalydeco® - yes or no?
Hello! Our daughter has been diagnosed lately at the age of 6 years. She has a marked pancreatic insufficiency, for 1.5 years a stagnating course of height and weight, furthermore an FEV1 value of 111%. Staphylococcus aureus and Haemophilus influenzae have been there for a short time, however have disappeared fast after oral antibiotic treatment. With Kreon and Omeprazol (beacuse of too much gastic acid and a gastritis) she has gained in the meantime one kilogram. Our question is now, does it make sense in spite of this favourable course, to take Kalydeco®? Can it protect the lung against potential germs and damages? What is your opinion? Best regards!
16.05.2015
Handling of pets
Dear expert team, my son (14 months old) suffers from CF. My in-laws, who are also our direct neighbours, have many animals (a dog, a cat, chicken, rabbits and sheep). My son is really crazy about the animals, but I am very insecure, in how far I shall allow the contact with the animals regarding problematic germs. The dog is running freely on the ground, can therefore also go to the dunghill and can take a bath in the creek, that is running through the ground. Is it o.k. that my son plays with him and strokes him? The rabbits are in a stable that smells like a stable etc. Until now I did not allow him to stroke the rabbits in their stable, as their dung is in there, either. I am however not sure, if it is for him in general dangerous, to be in the stable at all. Can problematic germs be also in the air (Pseudomonas)? The stable is mostly closed during the day. The 3 sheep are located during the winter in a stable. In case of good weather the door of the stable is mostly open, the airing is therefore better here than in the rabbit stable. In spite of this I am not sure, if it is good, if my son stays in there. Could you tell me, how should I behave the best concerning the contact to these animals. I do not want to forbid everything to my child, however do not want to expose him to unnecessary dangers. Many thanks in advance for your help!
16.05.2015
Phage therapy
Dear ladies and gentlemen, in the past, it has been written quite a few times about this topic, but as some time passed inbetween, I ask myself, if there are important findings. My husband (30, CF), has for about 10 years the germ Achromobacter xylosoxidans in the sputum. This germ did until now never cause great problems concerning inflammatory parameters or concerning decrease of the FEV1 value. Since 2 years, this has unfortunately changed. The germ is faught in regular time intervals of about 3 months with Imipenem/Cilastin i.v. This is then for about 4 weeks successful, but then, however, this germ occurs increasingly with intensification of symptoms. This worries us a lot because of resistances. Many actual press releases report about the so-called phage therapy with bacteriophages. Howfar is reasearch concretely and is it now already possible in the single case to get such a therapy against a specific germ like AC in combination also with antibiotic therapy in accordance with the physician? Many thanks!
16.05.2015
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