Topics

Contraception
Hello, I am carrying the F508del, I am 21 years old I am diabetic and I have a thyroid dysfunction (hypo) and I take the pill "leeloo®". I saw several articles on the need to focus most heavily dosed ethinylestradiol pills. Concrening CF articles I see the opposite. What is that about? In addition is there a risk of inefficiency of the combined pill when taken with other antibiotics (amoxicillin + clavulanic acid, ciprofloxacin, trimethoprim)? Thank you in advance cordially
20.06.2016
Sweat test and elastase activity and genetic is negative
Hello, I have a daughter who is 6 years old and another girl who is 4 years old. The 6-year-old girl has chronic constipation and two hernias (one in the inguinal area and the other in the abdomen). She is growing slowly. The little girl of 4 years had some rectal prolapses. Her sweat test and elastase activity and genetic investigation are negative. Normal weight, however she is not tall. Normal mucus and infections of the airways. Are you of the opinion that we should have investigated more? Thank you.
20.06.2016
CF???
Hello, I am worried abou my 15-months-old daughter. She is coughing since the middle of January. Sometimes with fever and sometimes without. Nothing seems to help (she is inhaling cortisone…ambroxol…cough syrups…)I have been with her to the pediatrician…in hospital…general practitioner…pneumologist..they say always that it would be an infection that will go away in 2-3 weeks – this is however not the case. ..she has a lot of mucus…if she has a coughing period, she is even vomiting and gets dyspnea. This was about the cough. Furthermore, she is from the beginning on sweating a lot and then smells like vinegar. She is also tasting salty. Since the cough started, her stools have also changed. Mostly constipation and then comes a portion of stool that smells awfully and is like diarrhea. She is 83cm tall and weighs 12 kg. I would like to have a sweat test done – however today my general practitioner did not want to give me a prescription. I would have to go tomorrow to the pediatrician he said. Could here be CF underlying? [Translators comment: later came the following additional information:] Today a sweat test has been done at a CF center, this was normal with 22, the doctor said I would not have to worry....
20.06.2016
Water from the tap
My daughter has CF. She wants to use the water from the tap. Would this be possible if she uses a waterfilter? Best regards,
20.06.2016
White margin of sweat in case of sweating
Hello, I have the following question: It strikes to me, that my son (16 months old) has a white margin of sweat from sweating in case he had his dark hood on while sleeping for a long time in the buggy, just in the shape of his head. The margin also tastes salty. It did not strike to me until now, even not in the dark car seat. He is rather gentle with this 16 months (10kg, 85cm) but he eats not too much; he had sometimes rhinitis and cough, that was always productive and could be coughed up easily. The newborn screening was also negative. Should one in this case make a sweat test to be sure? Many thanks.
20.06.2016
Diabetes
Hello, I am 35 and I have cystic fibrosis, and I have been treated with insulin (Lantus) for a few months after diabetes has appeared. It looks roughly controlled, but I sometimes have blood glucose values that rise after the evening meal between 1.70 and 2 g. It occurs on an irregular basis depending on what I eat, but not always. One night I eat a pizza at home and it is not good, but eating the same thing for lunch, I have no worries ... I may also mix vegetables with some bread and it goes up, although it seems to me that it should be all right, which is also often the case. I struggle to find a logical way and I wonder if these high blood glucose values are real problems or remain acceptable. I thought that lantus would allow me to eat almost normally during meals and ultimately it is not always accurate. It is also complicated during the outings (appetizer, larger meals ...) and mainly at weekends. I realize that lantus does not allow me to eat normally as it had been presented to me by the medical team at the initiation of treatment. I have already lost weight. If I eat differently by removing starchy food, loss of calories will not allow me to maintain proper weight. Thank you to enlighten me on all this because I still have periods of doubt and major concern. I have a feeling of additional deprivation (besides everything else) as basically I am a good eater, and luckily my weight was good until then. Moreover, this treatment was to bring me a real improvement in my respiratory condition which deteriorated due to the onset of diabetes. And I do not see the expected results, 6 months after the start of insulin. Thank you.
20.06.2016
Organic hygiene products: with or without risk
I’m a 35 year-old CF mother. I always had a sensitive and reactive skin and my daughter is like me. To find some natural products was not very easy, so I opted for more natural hygiene products, and I bought organic products "URTEKRAM®" for the body, the shampoo, the deodorant. But can I really use them serenely, without bacteriological risk? Thank you for your answer!
20.06.2016
Sanitary disinfection
Hello Concerning my CF daughter, I have a question about sanitary area. I would like to put disk gel in toilets. But is it a risk of stagnation of germs? Thank you for your answer
06.06.2016
Glutathione
Hello Could you please give us information regarding reduced Glutathione? Is there any deficiency for CF patients (that would be expected) ? Is this deficiency associated with some symptoms in particular? Is there any research done with external supply of Glutathione? What type of Glutathione? What are the results?
06.06.2016
Spirulina
Hello, Could you tell me if Spirulina Bio, powdered, could be beneficial for my CF adult daughter? Is there a risk of bacterial contamination with this dietary supplement? She has an Aspergillosis. Thanking you in advance. Best regards.
06.06.2016
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