Topics

P. aeruginosa
Hello, I am starting to collect information about whal will my nephew with CF be able to do and not to do as he gets older. I have read, that bacteria Pseudomonas is very dangerous for this children. How is possible to be infected with Pseudomonas? Is it possible to be in the garden? How is possible to be infected with this bacteria from soil? Thank You very much for an answer.
22.11.2011
B. cepacia
Is it possible to detect Burkholderia cepacia in water?
22.11.2011
CF_2
My son is almost one year old now. When he was three months old, a test showed that he has a high level of chorides in his sweat. Since then we have gone to medical every month but my son hasn´t been ill yet and he doesn´t even cough. His genetics test confirmed that he has CF but I didn´t get any explanation about his condition. Does my son have a milder form of the disease? If so, what does it mean for us, his parents? So far I have been administering Creon to him. He takes Vigantol in his milk, as well as vitamin E. We also have N-acetyl-cystein in case he coughs, but he hasn´t done the inhalation yet.
22.11.2011
CF
My eleven-month-old son had a test carried out when he was three months old. The result showed that he has 74 mmol/l of chloride in his sweat. He weighs almost 12 kilos and so far he hasn´t been ill except cankers in his mouth. A genetics test confirmed that he has 2 CF-typical genes. I would like to know if CF can break out later in his life or if there is a possibility of a milder form of the disease. I would also like to know what the milder form will mean for us as a family, but, above all, for our son.
22.11.2011
CF testing and ATB
Hello, I want to ask if taking ATB may influence the result of a sweat test. My son was tested due to repeated coughing. The result was 13. When he was tested he was treated by antibiotics (clarithromycin) what I have forgotten to mention. He was without fever. Thank You.
22.11.2011
CF (Swest test)
Hello, my daughter, born in 2004, has sweat test 58.5, ...55, but genetic testing were negative for CF (42 mutations). She is ill all the time with repeated sinusitis, wet prolonged caugh. Just ATB helped her. Her condition gets better after antibiotics treatment, but as soon as we start going out, to school etc., cough and other problems return within a week. Do You think she might have CF in older age? Thanks for an answer.
22.11.2011
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
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