Topics

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
Extreme hand wrinkling
Hello, I currently am experiencing extreme hand wrinkling within minutes in a bath tub or shower my hands are extremely wrinkled and burning or tingling. I do not have Cystic Fibrosis or diabetes...I do have JRA.. Does it have to relate to a disease?
27.01.2014
Abnormal sweat test
My 6 year old has had complications from birth and is in the 5 percentile for weight and height. At 6 weeks old he was hospitalized for an extended length in time for R.S.V. and has issues since then. He has had bronchitis a few times, croup, had two adenoid removal surgeries, a tonsillectomy, been diagnosed with chronic sinusitis, and is generally always sick. He coughs up lots of dark green and yellow phlegm, and has coughed up blood several times (which has been said to be due to the sinusitis). He also just has his nasal passages opened because the infection was to thick to drain on it's own. Meds don't clear it up.We recently started seeing a new doctor because his last doctor kept saying it was allergies and asthma and all of the medication he put him on wasn't working. The new doctor wanted to start over and rule out everything to try to get to the bottom of his illnesses and sent him for a sweat test. I received a phone call last week that his test results were abnormal (his sodium chloride level is a 53) and we are now being referred to a children's hospital for further testing. I was just wondering what the outcome of the second tests may be (are they usually similar to the first results?) and how likely it is that he would be diagnosed with cystic fibrosis or atypical cystic fibrosis. He is mildly salty when I kiss him and his bowel movements are sticky and tar like at times, and also strange colors (like bright blue, green or yellow). He has been to the emergency room with stomach pains several times. Thank you
27.01.2014
Low weight gain
My son is 9 months old with low weight gain. When he was born we decided not to do the neonatal testing. For 15 days now, his feces are like mud and have a strong smell. He has 4-5 movements daily. We, the parents, were not tested prior to the pregnancy. Should we worry? Do we need to get tested?
27.01.2014
Query for testing
My daughter is 10.5 months old, weighs 9.2 kgr and is 77 cm tall. Her growth up till now has been always good. Her bowel movements are regular throughout the day. I have not observed anything special as far as smell or quantity is concerned. Since 3 weeks my daughter has a cold and wet cough that persists despite the antibiotics. I am worried because my husband is a carrier of a CF mutation. I was tested for 95% of the CF mutations with negative results. I am aware of the fact that I may carry a mutation that belongs to the rest of 5%, or a mutation that is not detectable. Do you think it is wise for the child to do a sweat test or other tests, or should I wait and monitor the child’s symptoms? I gave birth at a public hospital (Areteio) where the IRT test is not performed. I was not aware that this test is performed in private hospitals, so I did not keep any of the child’s blood for testing it in a private laboratory. Should not this kind of testing be compulsory for all hospitals, public ones included? I chose to give birth in a public hospital because I trust the doctors and not due to money issues. I now feel guilty because my child did not have an important test. Should not this testing be expanded to include all hospitals?
27.01.2014
<<  < 112 | 113 | 114 | 115 | 116 | 117 | 118 | 119 | 120 | 121 | 122 | 123 | 124  ...  342 >  >>