Topics

Aerosol in an 18 months-old child
A Pseudomonas aeruginosa has been found for the first time in the sputum of my 18 months-old son. The CF Centre physicians have decided to treat him with twice daily nebulized antibiotics (15 minutes per nebulization). He totally refuses the nebulization and when I force him to do that, of course he’s screaming and crying. So, I am in doubt with the treatment efficacy. Is there another possibility? On the other hand, because of this primocolonization, will my son require regular antibiotics treatments in the future? Is it possible to eradicate this bacterium? Thanks for your responses.
21.01.2013
tap water
Hello, I am the mother of a little boy with cystic fibrosis and I am surprised it is not forbidden to drink tap water. My CF center tells me that there is no problem [translators comment: this question is from France, so the information is about the state of French tap water] but I'm stumped because water stored is probably full of germs ... Can my son drink the water without worry? Thank you
21.01.2013
EMA (European Medicines Agency)
Hello, I would like to know what is the role of EMA in treatment research? Thank you in advance.
21.01.2013
chlorination
Hello, To fight against harmful bacteria for a person with CF, it is advisable to bleach regularly sinks, tubs, toilets ... Does repeated use of bleach be likely to make domestic bacteria more resistant ? Secondly, products or wipes that fight 99.9% of bacteria but do not contain bleach are they as effective? Does too much hygiene also prevent the body to defend itself when it meets bacteria? Are there risks to live in a too aseptic environment?
21.01.2013
Danger
Dear expert team, I am the father of a daughter with CF (6). For some time, I have a romance with a young woman who also suffers from CF. She is Pseudomonas positive (mucoid form). Now my question: Can it come with the exchange of intimacies (kissing, ...) to the colonization of Pseudomonas in my nose-throat tract that I in return can transfer to my little daughter? Or is there no danger in this way? Many thanks for your answer.
21.01.2013
Contraception in case of CF with diabetes
Dear expert team, I (22 years old, CF) have a few general questions, that could either not be answered satisfactorily by my gynaecologist nor by my CF-doctor. 1. Which contraceptional method is the one most suitable in case of a CF patient with induced diabetes- except condom? Also in respect of the frequent intake of antibiotics, as well as at the moment itraconazole against candida. 2. Until now, I am taking the pill (Cerazette®, 75µg, contains only gestagens, so called "mini-pill")) and have rather been quite satisfied with it. My BMI is 16, I did not have my menstruation for about 2 years now. Due to the low BMI I however do not know, if this is due to the pill or to the underweight. Furhtermore, I do have bleedings since some days. What is the reason? Due to my health condition (FEV below 30%) by no means I should become pregnant. Due to the diabetes I am not allowed to take a "normal" pill (problems due to the contained hormones). I ask you for a quick answer, as I am at my wits' end with those questions. Many thanks in advance. Best regards,
21.01.2013
CBAVD G551D Mutation
During a diagnostic work-up for azoospermia I (32 years old) was diagnosed with a heterozygous G551D mutation. If this is indeed CBAVD (congenital bilateral absence of the vas deferens), shouldn’t there be a further (undetected) mutation? I have been having slight digestive problems for a year now. Would an appointment at a CF clinic make sense? Many thanks for your answer.
17.01.2013
Clostridium diff.
Dear expert team, A good friend (30 years old) was diagnosed with small numbers of clostridium diff. through a stool test. During some internet research I read that these can be infectious and that they have to be considered a normal intestinal germ in healthy people. I am a CF patient and PSA positive, am taking Zithromax® (azithromycin) as permanent therapy and am not exactly stable with regard to the intestinal flora due to the antibiotics. I also just had an i.v. therapy. What should one do? Would keeping a distance be better for now? My friend visits quite often and we spend a lot of our spare time together. Many thanks.
15.01.2013
construction of house / fireplace ?
Hello, We are parents of a CF little girl of 10 months and we are building our house. As part of the disease, we wonder if there are precautions to observe that could allow her to live in an environment as healthy as possible, and also make our lives easier in terms of hygiene at home. - A ventilation system to favor dual stream, single-flow? - Flooring? - Installation of a fireplace or wood stove avoided? Thank you for your answers.
15.01.2013
High-dose i.v. therapy with vitamin C (7.5g)
Dear expert team, Due to frequent infections (CF patient, 50 years old), my doctor suggested a high-dose vitamin C i.v. therapy (twice a week) in addition to taking antibiotics. This is supposed to strengthen the immune system as a supportive therapy. I am now wondering whether this makes sense, since we as CF patients always have to grapple with bacteria. What is your opinion on this? I also have another question: I have not yet gotten a flu shot. Due to the infections, my doctor does not vaccinate. She usually waits about 4 weeks after I have finished antibiotics, but then usually the next antibiotics therapy starts. Can I get a vaccination nevertheless? I do not have a fever. Many thanks.
15.01.2013
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