ecorn-cf: App. question list

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Visit at the out-patient clinic / child puts finger in the mouth: Dear ladies and gentlemen, my daughter, CF, 7 years old (Pseudomonas negative) plays in the childrens waiting room and touches the floor and permanently she has the hands in the face and in the mouth. I do not like this and have talked to her many times, but she says that she could clean her hands with disinfectant but only afterwards. I do not know how to handle this, as especially in the out-patient clinic where there are 5 different clinics germs are present. Yours sincerely and many thanks,; 26.05.2009

Hypoglycaemia / weakness: Dear ladies and gentlemen, I got a glucometer for 4 weeks from my CF-doctor as I have a great hunger during the night. The lowest count was 3.9 mml and the highest 8.9 mml. I have visited a diabetes specialist because I have always episodes of faintness and only hardly could stand on my legs and he said with this counts I would not have a diabetes. As my eyes worsened to -7.5 dioptries, I have great fear of getting a diabetes. Does it make sense to go on measuring the blood glucose level, as the diabetes specialist said, it would be a shame about the testing strips. Many thanks,; 26.05.2009

Frequency of bowel movements very seldom, since taking Kreon: Dear Dr. Posselt, many thanks for your answer. Our sons bowel movements are since the beginning of taking Kreon nor frequent neither smooth. They had been like this before. Since we started on Kreon, he almost has obstipation, his stool is now due to the Kreon very volumious, stinky and mucous. As said before, he is completely brest fed. I can not give suppositories all the time to my baby that it can have bowel movements?! He is also above the average with his height and weight. In 3 days he is 7 months old, has 68 cm and weighs 8750g. At diagnosis, when he was 6 weeks old, we were told to bring a stool sample and there the enzymes were missing responsible for digestion of fat. Could it be that the pancreas restarted working on its own? And he does not need the Kreon anymore? And why does he not taste salty anymore? Many thanks in advance,; 26.05.2009

Separation of positive-negative patients and ice cream shop: Dear ladies and gentlemen, many thanks for the quick answer. I myself suffer from CF and I am negative (Pseudomonas) [this was added from the translator] like my daughter. At the last appointment at the clinic, several patients were positive and I only got this information after one hour from the nurse and I have been very sad that I did not get this information before. At our childrens' outpatient clinic positive and negative patients are also separated, but some nurses have to be told again and again, that they have to disinfect their hands after every patient as you do not know if a patient already carries different germs if a swab has not been taken for the last 6 weeks. I have one question, at the hospital there is an ice cream shop, and it is hard for me to say no to my daughter as the hygiene is not present there. There is a container where all ice cream spoons are stored and no running water and in addition, after rinsing of the spoon it is dapped with a damped cloth and this I find very critical. Is it sufficient if the salesgirl rinses the ice cream spoon with hot water? Many thanks,; 26.05.2009

Permanent antibiotic therapy: Dear expert team, our daughter is 16 months old an has CF. Until now we had only problems with the intestine and not with the lung. No colonization with germs, no cough or higher susceptibility for infections. In our town there are two CF outpatient clinics. We are cared for in one of them, a permanent antibiotic therapy has never been mentioned there. We wanted to look at the second outpatient clinic and did refer our daughter there. They said there, that they would recommend a permanent antibiotic therapy to all patients. What do you think of a permanent antibiotic therapy? Best regards,; 26.05.2009

carrier: Is it true that if you are a carrier of the CF-mutation, you are more prone to get certain infections and you need to follow a treatment program?; 18.05.2009

Grapefruit and antibiotics: I read that the action of some antibiotics changes when you take them together with grapefruit (juice). Is this correct and is this the case with ciprofloxacine? Is the action stronger then?; 18.05.2009

Desperate: My son has all signs of CF. At the hospital, they refuse to test for CF because he is growing well. His growth curve looks like a wild water sea. The first years of his life, he didn’t grow well at all. He weighted 10 kilos before he was one year old but at the age of 2, he still only weighed 10 kilos. In march last year, his tonsils were removed and since then he eats better. Now he is 3,5 years old and weighs 16 kilos. But he also loses weight quickly. Wich hospital should I go to with him? I’m really desperate. Thank you; 18.05.2009

Tube water: My daughter with Cf (6 yrs old) drinks tap water in the Kindergarten as do all other children. Our physiotherapist has cautioned us not to let her drink tap water, since tap water can be contaminated with bacteria. However, the water quality in the Kindergarten is high according to drinking water standards, and we know that she never should take the first water after opening the tap and we also let the water run for some time before taking water to give her to drink. These precautions are also followed by the Kindergarten. However, the general verdict not to drink controlled drinking water was new to us. Is our physiotherapist right?; 18.05.2009

Lung transplantation: I am aware that my son 21 years who has CF will need lung transplant . Where and how could I record my son for transplant. We are from Moldavian Republic .; 18.05.2009