Topics

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
Request: IV worsening of the saturation
Many thanks, Dr. Fischer, this would be on the other hand quite good! I have forgotten something...after the iv therapy (2x3 millions colistin and 3x4g tazobactam/piperacillin) I have problems with glaring light...supermarkets or strong sunlight are hardly bearable and I have problems with large crowds of people....can hardly concentrate on one...especially acustically..everything is too much for me...this lasts at least 2 weeks after the i.v....did you ever hear of such a thing? Can it also happen, that it will one day not be reversible anymore? Best regards and thank you!
10.01.2015
Heterzygous CBAVD mutation TG12-5T/TG10-9T
Hello, my daughter has the above mentioned mutation of an atypical CF, how did it happen? Many greetings, S.
10.01.2015
IVF with ovocyte donor
We intend to proceed within the next few months to IVF with ovocyte donation. My husband was tested for 50 basic CF mutations and was found concerning the intron 8-5T/7T/9T to be a carrier of 5T/9T polymorphic tracts. The results for the other subtypes were normal (for the subtype R117H in particular). Should mu husband be tested for more CF mutations? The doctor does not consider it to be necessary for the ovocyte donor to be tested for CF. Is this true? Is there a chance I could have a child with CF?
10.01.2015
CF chance
My wife is 22 weeks pregnant and she was checked for 90% of CF mutations and the results were that the polymorphism p.V470M (het) rs213950 was detected. What are the chances for the foetus inheriting CF or some other disease? I have not been tested for CF.
06.01.2015
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