Topics

Cystic fibrosis and general anesthesia
Hello, My 6-year-old son has to undergo a very minor dental operation. It was initially planned under general anesthesia. But the day of the intervention, one of the anaesthetists opposed the general anesthesia by precaution due to cystic fibrosis. I specify that the CF Center had validated the initial decision of general anesthesia and that the respiratory state of my son is completely satisfactory as well as his general health. I don't understand this reluctance and I wonder how an operation in emergency situation would have been managed... In other words: is cystic fibrosis a contraindication to general anesthesia? Thank you for informing me. Cordially
03.02.2014
Strong cough at night
Hello, I have a 6-year-old daughter with CF and she is coughing for nearly 2 months, at day time less and at night time very much. What can I do for relief? She is taking antibiotics for the whole year with only few pauses, thus steadily. From the cough blocker noscapin she gets stomach ache. Many thanks for your answer, I am just again sitting at her bedside.... Many greetings! H. H.
03.02.2014
Cayston®, hemoptysis?
My son, 33, is told to inhale Cayston® (aztreonam) and has worries after reading the drug leaflet. He has had 3 times hemoptysis with years intervals inbetween, 2 times he had to be admitted to hospital due to this, whereby it was not necessary to intervene in the end. It is not written in the drug leaflet, how frequent this side effect is and if it can also come to dangerous hemoptysis. Can he feel secure in case a hemoptysis occurs and he stops inhaling? With a thank you and best regards, B. S.
03.02.2014
Visit of indoor playground / danger from strong fan of jumping castles
Dear expert team, is there any danger from the fan of a jumping castle? Partly completely closed "rooms" with strong fan/ air pressure. I have already tried to get some information myself, however do not find any answer. My son (CF patient, 5 years old) is invited to a birthday party, which should take place on an indoor playground, with numerous jumping castles (open and closed!! rooms). Can I let my son participate without any worries? Many thanks for your answer!
03.02.2014
Pulmozyme®
Dear experts, you write in an answer to a question from january 2013 that Pulmozyme® (rh-DNAse) has to be broguht to room temperature before inhaling, therefore should not be inhaled directly when taken from the fridge. May I ask where this information comes from and why it is not written in the leaflet nor in the drug brochure of the Roche Company, and why the CF Center does not point this out, either? Our son inhales Pulmozyme® for 5 months and is at the moment very hoarse for the second time. Even if I know that hoarseness is one of the frequent side effects of Pulmozyme®, I understood your answer from last year like this, that one can probably avoid this side effect by bringing it to room temperature. Would you enlighten me on this? Many thanks!
03.02.2014
Air humidity
Dear expert team! There is a former question (http://ecorn-cf.eu/index.php?id=65&L=0&tx_expertadvice_pi1%5Bshowitem%5D=2767&tx_expertadvice_pi1%5Bsearch%5D=) that have only been asked and answered recently, that deals with the improvement of the air humidity in the bedroom in the wintertime. This is also a big topic in our family at the moment. In case my daughter (CF, 14 months old) is coughing due to the dry air in the bedroom and/or cannot sleep, I install several bins in the room with just boiled water mixed with salt...that means quasi selfmade NaCl solution. My question now is, how long am I allowed to let the bins stand without risk of transmitting Pseudomonas or other humid germs via aerosols? Normally, the bins are there from about 10 pm in the evening (or even later) until at maximum 7 am the next morning - is that too long? Many thanks for your answer! Best regards, M.L.
03.02.2014
hygiene
Hello, I recently started working with patients with cystic fibrosis. I search all the recommendations on hygiene validated by recent studies. There are two recommendations on the website of Roscoff [France], dated in March 2004, including one for patients and one for professionals. Are these recommendations always up to date or have they evolved? Is there a recent consensus? Thank you in advance,
03.02.2014
Linaclotid in case of DIOS, recurrent subileus + addendum to linaclotid question
Original question "Linaclotid in case of DIOS, recurrent subileus etc" from 26.11.13 ----------------------------- Dear expert team, I (47, CF) have been prescribed today linaclotid from a specialized center for gastro-enterology, as I frequently suffer from DIOS, recurrent conditions of subileus, coprolites and paralysis, pseudoobstructions. If necessary, I perform myself at home infusions of sterofundin, enemas and anti-emetic therapy; a pain therapy is established, supervised and adapted according to the level of pain. Objectification is always done. Furthermore, I am provided with gastrographin® [contrast medium]. A therapeutic trial with prucaloprid 2 mg over 6 weeks in the last spring did not bring an effect. Which experiences do you have with linaclotid? It is important for me to find a possiblitiy to improve my situation, as first of all, I am working more than part time, but secondly I want to delay a stoma as much as possible (and if, then only as a relief enterostoma that is replaced as soon as possible). Citation from the leaflet: "Linaclotid is a fully synthetic peptide, composed of 14 aminoacids, that acts via activation of guanylatcyclase-C-receptors (GC-C) on the luminal side of the epithelium of the small bowel and colon. The activation of the GC-C receptors leads to an intra- and extracellular increase of cyclo-Guanosinmonophosphate (cGMP). cGMP acitvates the Cystic Fibrosis Transmembrane Conduction Regulator (CFTR), which leads to secretion of bicarbonate, chloride and water. The result is loosening of the stool and shortening of the bowel passage. It is in discussion, that cGMP increases the threshold of the colon-nociception and therfore decreases the pain. " As far as this, it sounds good and logical to me, in spite of the fact that it has been licensed for patients with irritable colon. Many thanks in advance for your opinion. --------------------------------------------- Addendum from 10.12.2013 --------------------------------------------- Personal Feedback: After 2 weeks of intake, (until now) no effect could be observed. However, nausea occurred ingreasingly. The intake of linaclotid was in addition to the existing therapy with macrogol, sodiumpicosulfate drops (3 x 20 Drops), odansetron (if necessary i.v., metoclopramide not effective, dimenhydrinate has too much effect on the circulation), sterofundin via the port (in case of vomiting) and pain therapy with tilidin as basis therapy and fentanyl nose spray 100 µg in the acute situation. Gastrographin® is available at home in case of emergency. Enemas are done at home. Supply with nutrients via parenteral feeding. Exercise and massage of the adomen accomplish the therapy as non-medicamentous factors. Until now it seems that linaclotid, as well as a former therapeutic trial with prucaloprid (other mechnism of acting) could not improve the motility situation. I was worth a try.
03.02.2014
Tobramycin
My child has Pseudomonas and uses tobramycin inhalations. What is the duration of treatment?
27.01.2014
School
hello, My son will be soon in school and I have a lot of questions. Could school refuse or reject the rules of hygiene or refuse to give pancreatic enzymes? My CF center is against the establishment of a Mobility & Living Aid but I am very anxious for meals in the canteen. Can we have a Mobility & Living Aid for meals at the canteen for a few months to see how it goes? Thank you for your answers.
27.01.2014
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