Topics

Prograf® serum level
Hello, I have been transplanted with the living-kidney of my wife in 2009, everything went fine. My serum level of Prograf® (substance: tacrolimus) was always around 7 in the last month with 1.5/1.0, now we reduced to 1.0/1.0. I have been on holiday (Tenerife) and got strong cough and took an expectorant. Now the serum level decreased suddenly to 2.5. Have increased again to 1.5/1.5. Why does the serum level decreases suddenly so strongly?
23.04.2013
Sweat test
Dear expert team, Our son (14 months-old) has already had 2 sweat tests, the first one due to an obstructive bronchitis at the age of 3 months and the second one has been repeated as he had been in the university hospital due to an unclear obstipation at the age of 6 months (this obstipation was quickly over after a bit of changing the food). Both tests had been negative and were also clearly under the "greyzone", so that we have been told, everything was o.k. About 6 weeks ago he got an infection from the Kindergarten and he coughs since then. Not very strong and also often rather dry, but however continously and our pediatrician said that this was rather a dry cough and the lung would also be mostly free. He said also, that I should definitely forget about the topic CF after 2 negative sweat tests, I however am worried because of the persistent cough and the prehistory. Furthermore, I stated today that his weight is nearly on the same level for 3 months (only 100g more), he has however been a really big baby and has been on the 97. percentile until the U6, so that he gets a normal figure now. His digestion is mostly normal, he only has to fight often flatulences. Under these circumstances should I ask the pediatrician in spite of his doubts for a third sweat test or another further diagnostic or would this be exaggerated?
22.04.2013
Mice
Dear experts! For a longer time I have mice from outside in my appartment! As I have read about all the diseases such mice can transmit (e.g. Hanta virus), I am seriously worried. I do not know anymore how I should handle it with the hygiene, as the creatures have been almost everywhere, kitchen, cupboards, sofa, bags etc. My son who suffers from CF is however already 16 years old and does not play on the ground anymore, but I have also a daughter of 4 years who likes to play from time to time on the ground and an older son, who does not take hygiene for serious. However unfortunately one does not see the excretions immediately and tears it from here to there and in the meantime I find it even disgusting if I know something had been there. How should I deal with this? Many greetings and thank you.
22.04.2013
Extremely distended belly
Dear expert team, anew I count on your knowledge and possible hints how we can improve the health condition of our daughter (21 months old, CF with F508del and R553X, severe pancreatic insufficiency). The problem is, that all attempts to cope with the extremely distended belly of our daughter were unsuccessful until now. Under supervision of the dietician specialist of our CF-center, in addition to the usage of Creon® the following has been tried until now: Nortase® (digestion enzymes derived from plants), Resource Optifibre® (dietary fibre concentration), reduction of fructose, negative test of celiac disease, proton pump inhibitor. All without success...the dosage of the Creon® is at least at 2800 units (since our daughter eats with us at the table we have to estimate an give rather a spoon more). Our little one does however not complain about stomach pain, however looks permantly like being in high pregnancy. Only in the mornings at getting up the abdomen is mostly flat, as soon as she starts eating, the belly distends. Due to this, she is also impaired in her mobility. What can be the reason why until now nothing was successful? What can still be tried respectively how should we proceed? Many thanks for your help!
19.04.2013
Dry cough
Dear expert team, for 2 weeks I have an infection, which only consists of dry cough (healthy people without CF around me have the same infection with similar symptoms and duration). Every night I cough until after 12 o'clock. In the meantime also my larynx is affected, symptoms are pain and hoarseness. My main question is however, in how far my lung gets permanent damage? My FEV1 is at 60%. I am 47 years old. I have coughed more in these 2 weeks as otherwise in the whole year. What helps besides codein in case of dry cough?
19.04.2013
Permanent brace, loose brace or better no one at all?
Hello, I am a dentist and I am working in an orthodontist's office. We are treating at the moment a patient with CF (12-years old). Oral hygiene is not optimal but she wants absolutely to have her teeth done. Our question would be if we would do harm to the patient with a loose or permanent brace respectively which one would be better because of the germs that we have in the office in general as well as the germs which occur in the oral cavity respectively can multiply in the oral cavity during usage of a brace. Many thanks in advance
19.04.2013
Hyperechogenic bowel
I am having my first pregnancy. During the second level ultrasound a very mild hyperechogenic bowel was detected, as well as an echogenic field in the heart. The doctor said that if these findings do not recess by the 28th-30th week I must do an amniocentesis. I did the test for CF. What do you advise?
18.04.2013
Bleach
So do I understand it right that we can use "Sanytol®" instead of bleach?? French
18.04.2013
Tap water
Hello, We are often told to let the water run from the tap before touching the water. How long should we let the water run? What is the purpose of this action? Thank you.
18.04.2013
bath
When we bathe our children with cystic fibrosis at friends whose bathtub looks clean, do we have to use bleach for the bathtub before? (I know they do not use regular bleach) or should we avoid bathing them?
18.04.2013
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