Topics

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
Dental prophylaxis for children
Hello, My daughter (CF) is 6 years old now and my dentist would like to start with regular dental prophylaxis. I already know the procedure from my older son (non-CF). Among other things there is a blue liquid which is dabbed on the teeth to make visible whether the child has brushed its teeth well. During the last appointment with my son it occurred to me if using this “blue ink” would also be fine for my daughter since the little bottle was already half empty when the dentist took the liquid from it for my son’s treatment. I do not know how long this bottle has been open already. In this dental surgery/practice prophylaxis is only done once a week. Therefore, I could imagine that such a bottle is probably used during several prophylaxis days, i.e. during several weeks. Are there bacterial concerns for our daughter with CF? Should I ask the dentist if she could open a fresh bottle for my daughter every time? Thank you for your answer.
16.05.2015
Hygiene and cleaning of the house
Hello, Which are hygiene rules to be respected in the home of a CF baby about: - washing powder knowing that the clothes of a baby can be washed in no more than 40 degrees. - the dishwasher, how and when disinfected? - the refrigerator? - the cleaning of the work surface and toilets + bathroom? - what is it necessary to disinfect or not? - is a steam cleaner effective to clean a bathroom to avoid the use of chemicals? - how long is it necessary to sterilize feeding-bottles and teats? Thank you for your help
16.05.2015
Gardening and kitchen garden
Hello, My 4-year-old CF son has no particular worry like aspergillosis or pseudomonas infection (at least for now). He wishes that we plant flowers and that we maintain a kitchen garden together. I know that the aspergillus is in the ground, the compost etc.... If my son wants to do gardening, which are the precautions to respect? Thank you in advance
16.05.2015
Food supplements
Dear experts, Our son is two years old, is very pancreatic insufficient however otherwise one does not notice anything (yet). We are very faithful in following the conventional medicine therapy, and we will pursue it in any case like recommended. Now we ask ourselves, if we could do probably additionally "even more": What do you think about curcumin, krill oil and MSM (methylsulphonylmethan) as complementary therapy in case of CF? Even if some studies do not show any effect - could these perparations harm if they indeed do not have any effect? Thus, more concrete: does anything speak against a trial with these preparations? If it cannot harm: which preparations and which dosage could we try in case of our son? Many thanks!
06.05.2015
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