Topics

Kaleydeco® off-label
Dear expert team, in the USA Kaleydeco® (active substance Ivacaftor) is already used "off-label". Patients report about positive experiences in spite of the fact that there is not the so-called celtic mutation underlying. What are the chances that one can receive in Germany the drug for the mutation deltaF508? The market authorization process for the combination preparation after the termination of the 3rd test phase will for sure still last a longer time and I want to protect my children of unnecessary lung damage, insofar Kaleydeco® can even only approximatley have a positive influence on the course of the disease. Many thanks in advance for the answer to my question.
25.03.2013
Pulmozyme® Abdominal Pain
When my daughter does her breathing treatment with Pulmozyme® (active agent rhDNAse) she gets bad stomach pain. She doubles over in pain and it is hard to watch. When the Pulmozyme® is done it goes away. This happens every day, and I am just at a loss. She is crying and miserable. We use a mask when doing her treatments, so I do not know if that makes more of the drug enter the GI system or what. Are there in adverse events with Pulmozyme® that relate to abdominal pain?
25.03.2013
Preparation for school
All children when they go to school for the first time have to adapt and come in contact with many infections. Is it true that in their first year at school they come across a virus every 15 days? Do the children with CF produce antibodies, or is it always for them like the first year? Is it an issue if we do not have the time to do the physiotherapy in the mornings and do it in the afternoon and at nights? Is it better to expose a child with CF from an early age to people of various ages, so getting used to the infections by the time it is 4-5 years old, in order not to miss on school? If the child is continuously ill do we postpone schooling for next year or do we let it in order to adapt?
25.03.2013
Possibility for CF
My son is four years old and did a blood test for CF when he was born, which came out negative. He is a happy, energetic child and has been ill only 4-5 times with fever and cough. However, his growth is not normal. He has dropped from the 75th percentile to the 25th. The allergologist recommended some tests and we found that he has some kind of milk intolerance. We did a stool test and microscopically it was clean. However, the doctor recommended that we do a sweat test, which worried me a lot. Is there a chance that my son may have CF, although the test at birth was negative? What do you think?
25.03.2013
Symbioflor® - recommendable or not?
Hello, for years I have problems with digestion after antibiotic therapies. A bacterial mis-colonization has been diagnosed several times, after the intake of Xifaxan® (substance rifaximin) the complaints were always much better. Unfortunately, I get the prescription for this only, if I have run through the complete diagnostic again (including three different breathing tests). As I would have to be away from work at least for three days for this, this is not an option for me and I life with constant stomach pain. Now I think of trying Symbioflor® or a similar product. Does this microbiological therapy pose any risks in case of CF and if not, do you think this will be successful?
25.03.2013
modifier genes
Definition? Could these genes have a negative or positive influence on the diagnosed mutations 1) homozygotes 2 ) heterozygotes? Thanks, M. H.
15.03.2013
Ataluren and ABPA
Hello, Firstly, I would like to know where is the third phase of the drug ataluren, and secondly whether this drug is effective against ABPA in CF patients, or only effective on congestion?
15.03.2013
phage therapy
Hello. I learned today about the existence of phage therapy. What about the study of this technique on anti-infective treatment (Pseudomonas) in CF? Is it a line of research to be taken seriously? Is it already proven or is it to forget? I’m a CF patient and nobody never talked to me about this technique. Is it true that some patients go in Eastern Europe (where this therapy is used frequently) to be treated with phage? Thank you for your reply and for all the work you do. Best regards.
15.03.2013
Handwashing
Hello, My baby has cystic fibrosis and I'm wondering until what age we have to wash hands before touching and take care of her? Otherwise, we used to wash our hands regularly but the people we meet don't do it necessarily and sometimes they touch the hands of our daughter or her face without having washed their hands just before ... Is this serious? Should we force them to wash their hands before touching? Thank you.
15.03.2013
Equipment
We live in Canada and we will spend a holiday in Nice [France], and we need to rent a nebulizer and a compression machine (this is the name given in Canada). Do you know where and how we can rent this equipment?
15.03.2013
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