Topics

Feeding difficulties
Hello, my daughter is 22 months and she is in full opposition to food. If we listened to her, she would eat only yogurt, stewed fruit or bottles of milk. What should I do? Let her eat what she wants? Go to bed without eating, is it dangerous for her? We are quite worried. In addition, she has to take Creon with the food and she refuses to swallow it. I do not know what to do. Cordially.
25.09.2012
Germs in cistern water
Hello, my adult daughter (CF) lives in her own home but she also stays at our home frequently, especially to get some fresh air and sun in the garden. Our neighbour waters his garden with cistern water. Yesterday in the evening I noticed a disgusting smell like liquid manure. The water has obviously collapsed by bacterial contamination. To what extent can the water which is sprayed in my neighbour's garden could be dangerous for my daughter? I would like to inform my neighbour about a possible danger and would like to give the right arguments. He has two little children himself (5 years; one week!). Many thanks.
20.09.2012
Appearance of cystic fibrosis
My uncle is 83 years old and only now he was diagnosed with cystic fibrosis. I cannot imagine that because I read that this disease is congenital. Is it possible, though, that this diagnosis is correct? Many thanks N. H.
20.09.2012
Train ride to Austria
Dear expert team, I am planning to go to Austria on vacation by high-speed train shortly and am worried that I might not tolerate the air conditioning on the train. Is there any danger concerning the temperature regulation on the train for me as a CF patient? (Ca. 6 hours on the train.) You have written a lot of interesting things about air conditioning in cars or on planes, but I am not sure about trains. Kind regards.
20.09.2012
IRT neonatal screening
Dear expert team, our 12-month-old daughter is a little bit underweight (8 kg, 74 cm). She was born in the 36th week of pregnancy (2.150 grams). Neonatal screening was done and the IRT [immunoreactive trypsinogen] was examined which was inconspicuous. One week after birth the test was repeated and these values were inconspicuous as well. Since our daughter is such a lightweight I am worried and ask myself if cystic fibrosis can be excluded with this test. Until now, she has no bronchitis or diarrhea. Many thanks for your answer. Best regards.
17.09.2012
Cystic Fibrosis?
Hello, information that I found in the internet has made me think that I might have a mild form of CF. My personal data: 28 years old, female Since childhood recurring infections like sinusitis, bronchitis, pneumoniae & Otitis media. Once I had a myocarditis with a short stay at the hospital.During infancy I was diagnosed with allergic Asthma bronchiale and exercise-induced asthma and I have to take medication regularly for this reason. I have never tolerated fatty food well, it caused diarrhea and gall problems (rising bile). At age 11, tonsillectomy (TE) operation where also polyps where removed since I had chronic anginas with very enlarged tonsils. Since I was about 16 I was underweight, now my BMI is normal. I have never experienced to feel completely well and according to my mother I have been ill permanently. Personally, I think, this is not such a big problem but I am just not as high-capacity as other women of my age. Especially, I am having problems with being tired and exhausted all the time. Currently I just had a lateral pharyngitis with starting bronchitis and strong sinusitis which was treated with antibiotics. Only the second antibiotic had an effect after 1,5 weeks. I sweat very much since I remember and during infections I do sweat in such an extreme manner that I have to change the bedclothes in the morning. Fresh sweat tastes very salty. I drink three litre daily (minimum) and eat pretty salty since I have the feeling that I need it. Due to the current sinusitis my general practicioner referred me to the ENT-specialist after 2 weeks. He seemed concerned when he heard that I was operated three times for this reason (2 times widening of the paranasal sinuses & operation of the nasal septum). He said that there has to be a reason that I am still having a chronic sinusitis despite the operations and the medication. He wants to have a CT done once the swelling has gone down and then decide if another operation would be necessary. Reading up on chronic sinusitis, I now found that unsuccessful treatment can be a sign of CF. Now I am seriously worried, since my second cousin was diagnosed with CF only as an adult and died of it before turning 30. On the one hand, I do not want to come across as a hypochondriac; as it is, I hardly go to the doctor and try to do a lot with alternative medicine, but there are limits to that, after all… Now my question: Do you as an expert team think that the symptoms I am describing could point to CF, or am I being too subjective? Is a sweat test sensible in your opinion, or is that taking it too far? Many thanks in advance for your effort, time and answer! Kind regards. PS: Apologies for the lengthy message!
11.09.2012
Mucoclear® (6% hypertonic saline)
When Mucoclear® (4 ml of 6% hypertonic saline) is nebulized with an e-Flow rapid, there is a residual volume of 1 ml in the device. So, at the best, only 3 ml are inhaled, and a certain quantity of drug is also lost during the expiration. Do you think that it could be better to nebulize 2 doses of Mucoclear (4 ml x 2) to be sure to receive 4 ml into the lungs, or does it change nothing?
11.09.2012
Nasal irrigation
Do CF patients still have to use sterile salt water for nasal irrigation? After all, if we boil water for this, it has to cool down for at least 20 minutes; but during this time germs will form again!?!
11.09.2012
Nontuberculous mycobacteria and transplantation
Hello, I have CF and I have been colonized with Mycobacterium abscessus for the past three years. I have been previously told that M. abscessus colonization was a contra-indication to transplantation. Why? Recently, more and more centers accept to perform lung transplantation in patients colonized with M. abscessus. What has changed during recent years? Is there any statistics related to post-transplant survival under these circumstances?
11.09.2012
Precautions and risk of contamination at the dentist
Hello, are there any health precautions to take when you visit the dentist? What are the recommendations to give to the practitioner? Thank you
11.09.2012
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