Topics

Holiday
Is it a good idea to take a child with CF to the Turkish seaside? I would also like to know if flying is dangerous to him even if he doesn´t have any serious problems.
16.11.2011
Lack of Appetite
My six-year-old grandson was diagnosed with CF shortly after birth. Today he coughs more than other children and expectorates mucus. Otherwise he is an adroit and intelligent boy who runs, plays football, climbs trees and skis – all this thanks to Creon, massages, inhalation and nutritional drinks. His problem lies in the fact that he never feels hungry. When left to his own devices, he doesn´t have breakfast, snacks or lunch. He only reluctantly eats a small piece of bread for dinner. This is impossible, of course. His parents force him to eat and they punish him when he doesn´t want to – they forbid him to watch TV, play PC games or ski... When that doesn´t help, he gets shouted at and even beaten. I don´t think it possible to punish a child for its disease. Is there anything we can do to help the boy to develop an appetite?
16.11.2011
Stenotrophomonas maltophilia
Is intravenous antibiotics treatment necessary for a child with CF who has stenotrophomonas maltophilia and is resistant to peroral antibiotics? What other type of treatment would you recommend?
16.11.2011
What should I do?
Immediately after his birth, my nine-month-old son underwent several Gastrografin treatments because of insufficient bowel movements. His ultrasound scan clearly showed that some amount of stool remained in his descending colon, even though he was already excreting „yellow“ stool. His stomach was bloated, he had flatulance and didn´t vomit. The stool colour kept changing (it was first yellow, then brown, then green, then blackish) and so did the stool frequency (once in ten days). The results of stomach scan didn´t show any problems. When my son was about three months old, his stool became watery and it came several times a day, containing varied amounts of phlegm, black bits and streaks of blood. I started administering probiotics and went on a strictly non-milk diet for 2 months (I breast-feed). There has been no change. We waited for a gastroenterology examination for 5 months but when it came, the doctors only recorded my son´s problems and did blood and stool tests (the results were in norm). We have to wait until May for another consultation. When my son was six months old, we started giving him complementary food but everything came out of his body undigested. Five weeks later only a part of the food was digested, and now my son digests most of what he eats. I still breast-feed and my son thrives. Since birth he has had some mucus in his airways. When a swab was taken, haemophilus was cultured in his sputum but he wasn´t treated in any way. I´m afraid that he might have CF. Both our paediatrician and gastroenteorologist mentioned the possibility when asked, but neither recommended any futher tests. Can you help me, please?
16.11.2011
Positive Screening Result
Last Friday I took my one-month-old son to our doctor, who gave us my son´s screening results. The report stated that my son might be CF positive. There is a 5 – 10% probability of this. I am a diabetic and I was greatly upset by this information. I don´t know what the chances are that my son has CF, or if the test is positive or only unclear, as the CF web page states. No other blood testing has been arranged. I was only told I should make an appointment for a sweat test.
16.11.2011
Up-to-date Information
I´m working on my dissertation thesis on the topic of CF. Can you recommend a source of information about the newest methods of curing CF, the prognosis of the disease or any research that is under way in this field at the moment? So far, I have found only literature published up to year 2008. I will be very grateful for any more up-to-date information.
16.11.2011
Guinea Pig
Can I keep a guinea pig as a pet? I have CF and I´m afraid that I might get infected.
16.11.2011
Sweat Test
My seven-year-old daughter has been going to the CF centre in Motol, Prague, for a year now, but I am still not sure about certain things... She has been taking antibiotics every month since she was four, but she still frequently suffers from sinusitis and prolonged wet coughs. Her condition gets better after antibiotics treatment, but as soon as we start going out, meeting people or riding bicycles, my daughter´s problems return within two weeks. Her condition has been like this since she was four. Our allergist has recommended a sweat test. In Pardubice the result was 55, in Prague 53 and then 58.5. CF was ruled out by a genetics tests, but the results of the sweat test still seem very high. Do you think my daughter might have a milder form of CF?
16.11.2011
Amiloride Preparation
I would like to ask about the preparation of amiloride solution in our pharmacy. Does it have to be sterile even though our doctor doesn´t specify the need for sterilisation on the prescription?
15.11.2011
hygiene
Thanks for giving the cleaning recommendations for a valved holding chamber used with the buccal tip (Vortex). I clean the VHC with soap and water every day and use once a week a non thermic disinfection. Is it enough? Thanks.
15.11.2011
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