Topics

CF and vein situation
My three years old daughter has CF and Pseudomonas infection. Therefore we often go for intravenous treatment. I want to ask, if there is something for hardening of the veins, because our daughter must very often go for repunctureing and her veins burst very often. Thank you very much.
22.11.2011
CF Diagnosis
My son suffers from CF and my daughter is the carrier of one CF pat. allele with the F508del mutation. A test has shown that my daughter´s sweat has 25mmol/l of chlorides. My son was tested because of the aforementioned salinity. To me, the soles of my daughter´s feet and her palms seem as salty as my son´s (sometimes even saltier). This happens even shortly after I give my children a bath. Is it possible that the sweat test result wasn´t accurate and the genetics laboratory didn´t find the other mutation and my daughter is also ill? Should I apply for another sweat test?
22.11.2011
Diagnostics
My two-year-old son has had prolonged problems with failure to thrive and digestion problems (gastroesophageal reflux, flatulence, malodorous oily mushy stool once a day or every other day). He is often tired and weak. I have also noticed that there is very thick mucus in his nose (I clean his nose every day, so there isn´t too much of the mucus, but it seems rather thick to me). The results of all tests done on my son (blood, urine, antibodies against transglutaminase, uric acid, stool for bacteria and viruses etc.) are normal. Now my son has undergone a sweat test in our regional hospital. The result was negative (16). I was told that the low test result rules out the possibility of my son having CF. Does it really mean that I don't have to worry about him having CF, or would you recommend further tests or having the sweat test repeated at a specialized laboratory?
22.11.2011
Inhalation
Is it a good idea to combine amiloride with the salty Vincentka mineral water or physiological solution in the course of one day? The interval between amiloride inhalations should supposedly be at least 3 hours, but we cannot keep to this schedule, as it differs from our daughter´s needs. She inhales at the following intervals: 8:30 a.m. – 11:00 a.m.– 5:30 p.m. Is it normal that our daughter has a strong coughing attack after she starts inhaling amiloride? The cough subsides after about a minute and then the inhalation continues without any problems.
22.11.2011
CF Symptoms
My daughter (4 years old, with type I diabetes discovered in October 2007) has been sweating heavily since birth, especially at night. Her forehead is salty all day, not only at night. Her nose is blocked early in the morning. When she runs a lot, she starts to cough a bit and I can hear that her airways are full of mucus. Do you think she might have CF?
21.11.2011
Recurrent Pancreatitis
My daughter suffers from an atypical form of CF. In the summer she had acute pancreatitis, which has developed into a recurring problem since then. She has been hospitalized five times, but I still don´t understand why. We strictly adhere to the recommended diet. My daughter, who is allergic to milk, takes Creon three times a day. She also takes sodium cromoglicate and does inhalation. The same situation, however, always returns. Because of this, my daughter has missed a lot of her classes and she keeps having problems at school because of the situation. The school wanted her to repeat a whole year because she is always ill, even though she has an individual course plan. Please, give me some advice what to do. To make matters worse, the authorities have taken away my caregiver's allowance. Thank you for your answer.
21.11.2011
CF Patient´s Weight
Is it possible for me to have fat transplanted into my body? I´m a CF patient with stable weight. When asked, doctors tell me that they don´t have any information about this type of transplantation. The reason for my question is that it´s really annoying that my body has no fat reserves and I get very cold in water quickly. Thank you for your answer to a question that is probably superfluous to everbody else.
21.11.2011
Swine flu
Should I have my eleven-year-old daughter vaccinated against swine flu? She suffers from cystic fibrosis and she has been vaccinated against common flu.
21.11.2011
Sexual problems
My nephew is 18 and he suffers from CF. He doesn´t want to live and we think that he has problems with his girlfriend. I don´t know how to approach this problem and ask him. Is there a possibility that he has sexual problems?
21.11.2011
Pseudomonas
I have pseudomonas and I would like to know if I can pass it on a person who doesn´t suffer from CF but has prolonged low immunity because of flu. I would also like to know if there is any risk that I might endanger the health of a newborn child who is otherwise healthy.
16.11.2011
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