Topics

Emergency water supply -- what to do?
Dear expert team, due to road work until September 2012, our village has installed an emergency water supply system with thin hoses (4 cm in diameter) which is supposed to be put into operation next week after flushing and disinfection. According to the person in charge, this is permissible temporarily, even though the water will be significantly warmer. It is not recommended as drinking water. But what can I do prophylactically apart from letting the water run for a longer time before using it? To me, washing lettuce with boiled water seems unrealistic, and our nine-year-old son, who has CF, has to shower/wash/brush his teeth as well, after all. I am quite at a loss.
19.07.2012
Physiotherapy with Asthma and CF
Hello, When would you inhale Pulmozyme®? I feel that the secretion gets looser more easily if I inhale Pulmozyme® first and then wait for an hour before I do physiotherapy. 1. NaCL 0.9% and 4 dr. Ventolin® (salbutamol) 2. Pulmozyme® (DNAse) 3. Symbicort® (budesonide and formoterol) and Spiriva® (tiotropium bromide) 4. Therapy And if I combine the autogenic drainage with the humid inhalation (PariBoy®) and the PEP®, how can I hold my breath briefly with an open mouth? Would it be better to take out the mouthpiece briefly and keep the lips closed?
19.07.2012
Trip to Venice
Hello, do you think a trip to Venice for a person with CF is unreasonable, given the risk of exposure to Pseudomonas in the waters of the city? Thank you in advance
19.07.2012
Cystic fibrosis-prenatal diagnostics
Dear team, I would like to know whether I can test my unborn child for cystic fibrosis during pregnancy and if so, with which test? Thank you for your answer.
19.07.2012
LVRC (Lung Volume Reduction Coil)
Hello, I (45, male) have an emphysema stage III and I would like to know if LVRC (Lung Volume Reduction Coil) could be a future method to increase FEV1 a bit… Thank you very much.
19.07.2012
6% NaCl
Dear expert team, I have noticed that inhaling 8ml hypertonic saline twice a day with the eFlow® is more mucolytic than the usual inhalation dose (4 ml twice a day). Is there anything to be said against this higher dose? Many greetings
19.07.2012
possibility for CF
One of my twin boys, born 28 weeks, with low-birth weight (1,49 kg but now 9.2 kg at 32 months of age) had a sweat test with sweat volume 16K and result 59 The sweat test was done with the method of iontophoresis of pilocarpine at Rio. We could not perform another test, because the child does not sweat. During his first year of life he did not get sick. In his second year he had 4 episodes of bronchitis and this year 3 already. He is a hyperactive kid that eats a little and gains little weight. His bowel movements are 1-2 a day and do not float. The gastroenterologist (we visit him due to the low growth issue) and the pneumonologist have excluded the possibility of Cystic Fibrosis, but what about the sweat test and the episodes of bronchitis? The child has been genetically tested for the most common mutation in Greece (95%) at Horemio lab and myself for the 75% of the mutations with negative results. My husband has not been tested. The last blood tests in May were good. What do you think I should do? What are the chances of my son having CF? My doctors insist that the child does not have CF, not even the clinical symptoms of CF, but the combination of low weight - frequent bronchitis and the value of 59 at the sweat test do not let me rest. Is there something else I can do?
19.07.2012
Diet- large intestine
As a child with CF grows and the quality/quantity of the food is stable (nothing has changed) is it possible that it may not need as much Creon as it did when it was younger? I observe that the defecations stress the child. If we assume that the Creon is too much, how do I deal with the cacations? Should I give a meal without Creon? Since the hard feces are in front how can the softer feces come out? Is there a way to help the child and in what way?
10.07.2012
Caryotype check and CF
Due to miscarriages I was checked for CF at Laiko Hospital [Greece] with negative results. My doctor sent abroad a blood sample for caryotype analysis and it came back fine. Is there any relation between the caryotype check and CF? Do I need to be tested further for CF, or am I covered by the analysis at Laiko?
10.07.2012
Towels, bath towels, kitchen towels and other
Hello, In our CRCM, therapists have advised us to pay attention to the subject matter. What are the dangers and especially what precautions to take for a 12-years old CF not colonised with P. aeruginosa ? In advance thank you for your response Yours
10.07.2012
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