Topics

White vinegar
Hello, I use white vinegar at home because we have a septic tank therefore so little bleach, but I realized that white vinegar I use is crystal vinegar, I wonder if it is as effective as normal? Thank you in advance for your answer. Best Regards.
24.01.2015
Lake and amusement park
Hello I am a mother of a little CF girl wanting to go to a famous amusement park in Marne La Vallée (Disneyland). I would like to know if it was really dangerous or possible with rules of hygiene. In addition, most of the hotels are located near a lake: there is any risk of contamination with P. aeruginosa? Thank you in advance for your reply.
24.01.2015
Diagnosis respectively exclusion of CF at adult age
Dear ladies and gentlemen, I suffer since 2 years without cessation from strong cough with sputum (I am non-smoker), burning and tightness in the throat, hoarseness, cramps in the thoracic cage, back pain, a feeling of pressure in the upper abdominal tract, frequent diarrhea. The cough starts in the mornings, about 10 minutes after getting up. Altogether I cough in the course of the day about 3-4(!) hours, sometimes even more, with cough-free intervals inbetween. At night I am mostly free of coughing. To the diagnostics so far (I try to make it short): 2 gastroscopies, 2 thorax x-rays of the lung, 2 CT scans of the lung, allergy test, investigations of blood, 2 bronchoscopies, CT scan of the sinuses, presentation at the rheumatologist (all blood values in the normal range except for an increased ANA value, the lower values within the normal range), MRI of the cervical spine and the thoracial spine, ultrasound of the thyroid gland, lung function test, standard blood values - all that within the past 2 years and everything in the normal range. An underlying reflux/silent reflux as cause of the cough could be excluded by a 24-hours pH measurement/ impendance. Furthermore, a probatoric therapy with a blocker of the gastric acid did not bring improvement. I should undergo (according to my own wish) a sweat test, in order to diagnose respectively exclude CF as a possible cause for the permanent cough with sputum. As I am already 46 years old and have suffered only from recurrent and strong rhinitis in my former life (before the permanent cough) so far, in case of a positive result it would be, according to my understanding, an atypical form of CF. Now to my question: Which kind of diganostics would make sense in my case? Would a sweat test be more sensible or a genetic investigation or probably a measurement per Ussing-chamber? Many thanks for your efforts and best regards,
24.01.2015
Mucolytics yes or no?
Dear expert team, I have mucus in the upper airways that bubbles however cannot be coughed up well, are CF patients allowed to take mucolytics and if yes, which ones can be recommended? Many thanks
21.01.2015
Enteral feeding by gastrostomy
Hello My CF son, who is homozygous for delta F508, has a BMI of 14 and he seems unable to gain weight so he doesn't grow: he is 15 1/2 years old and has a length of 156 cm with a weight of 35.9 kg. All attempts have failed with calory supplements (my son was disgusted or took a supplement instead of a meal => useless), his pulmonologist and we are considering enteral feeding. I wondered if there is a risk that it could not work? Because it is still an irreversible surgery .. Thank you
16.01.2015
nose rinsing
Dear expert team, After hearing different opinions I wanted also to ask my question here. Is it necessary to boil the water that you use for rinsing your nose? Until today I used lukewarm tap water. Kind regards
16.01.2015
Nasogastric tube
Hello Our 8-month-old son has a nasogastric tube since the age of 2 ½ months. Currently, he has a normal weight for his age, diversification is well, he eats normally and well tolerates a richer diet. He is not thirsty in the day as he has half a liter of milk during the night. Our CF Center does not want to stop the tube and even suggests me to keep a good time but with no more precision. We would stop it because it is a very invasive device for the baby, what's your opinion on this issue?
14.01.2015
Stenotrophomonas
Hello, in my household there are 2 peole suffering from CF, one of whom has been infected with Stenotrophomonas. My question, how does the other one have to react in order not to get infected? With my best regards, K.
14.01.2015
compost pile
Hello, I read in the journal of the french CF association that it was dangerous for a person with cystic fibrosis to live next a compost pile. My neighbours just installed one, just on the other side of the fence (we have a very small garden so our son is often next to this fence). Is there a risk with this compost pile? Should I ask my neighbors to remove it? Thank you.
10.01.2015
Pseudomonas aeruginosa for the first time
Dear expert team, my son, 6-years-old, CF patient, very good general condition, lung function 124, has for the first stime PA. A small amount of germs! I am very much concerned and have great worries concerning my child. As the swab result before was totally normal, it can be said, that the PA is in the lung for nearly 3 months. Besides a very dry cough (in the beginning), he does not show any symptoms. Now, about 3 months later, the coughs sounds sometimes phlegmy. The university hospital is planning the following therapy: oral therapy with antibioitcs ciprofloxacin 250mg for the first time for 4 weeks (2 times daily). In addition an inhalative treatment with tobramycin for the first time for 4 weeks (2 times daily). In the end, the inhalative therapy is intended to be over a time frame of 12 months (!!). This long duration is worrying me a lot due to the side effects. My questions would be: - How do other CF centers treat a first infection with PA? - How are the chances to eradicate the germ, concerning the low number of germs as well as concerning the quite long time, my son carries the PA? Many thanks for efforts!
10.01.2015
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