Topics

New medications
What is your opinion about pancreaze and aquadeks? Are they available in Greece and have they been used in chlidren? Are they covered by social security? Are they any better?
13.09.2010
Candida albicans
Can Candida albicans be transmitted from the lungs to the partner by kissing or via other ways?
13.09.2010
Antibiosis treatment standards
Hello, how do you explain the fact that different clinics follow different treatment strategies? Specific example: i.v. antibiosis regularly or only when needed – see the Danish model. Should one not assume that the standard of knowledge is the same throughout one country, or that after years of different practices it should have become clear by looking at comparative data which method ultimately is the best? For patients, after all, these different views are quite confusing and incomprehensible. Kind regards.
13.09.2010
Creon necessary?
Hello, our daughter (18 months) has the F508 mutation (homozygous). I am giving her Creon for children, but am playing it by ear. Usually, the exact Creon dosage is calculated precisely for each fatty meal, but that is not necessary for her since she is getting by with very little Creon. When I realize that her stool is rather hard (small little pellets), I even avoid the Creon altogether for the next meal. My question now is: How can that be? Last year her elastase level was 7. After all, this means that the pancreas is hardly working, doesn’t it? And is it allowable for me to not give her Creon every now and then? She never has diarrhoea. Does the reduced amount of Creon influence growth? She is rather small for her age, 73 cm at 17 months (desired weight 101 percent). I have to add, though, that we as parents are only about 1,70 m tall. However, the CF center will check her growth hormones in November. Many thanks and kind regards, A.
13.09.2010
CF possible?
Is it possible, and I am not expecting a diagnosis, that a 13-year-old girl without pulmonary symptoms, but with two instances of pancreatitis (salt content measurement of 62 mmol/l and 72 mmol/l, respectively) has cystic fibrosis? [Translator's comment: information that is only of local relevance has been omitted from the translation.] Thanks.
13.09.2010
Positive sweat test - negative gene test
Hello, I have a 5-year-old daughter which suffers constantly from colds, gastro-intestinal infections and loss of appetite. She weighs 15.6 kg only with a height of 111 cm. 2 years ago my pediatrician had the idea of doing a sweat test. We did this 3 times and all 3 test were positive (far beyond 100). I had this test done in a hospital which is also specialized in CF. The conductivity had been measured, that is what I know. In one of the results however, the chloride content of the sweat had been measured and the value was 112. How reliable is this measurement??? Furthermore, an x-ray of the lungs had been done, which showed little changes, it has been said, the lung was involved minimally. An intolerance of food, an allergy to food, celiac disease or the other things, that could lead to a positive test result had been tested and were negative. Furthermore the CF-doctor there said to me that it was normal for CF patients that they suffer from loss of appetite. And I have been told, too, that every CF has a different course. One patient has all symptoms, the other only one symptom. My daughter suffers every 2 weeks from a gastro-intestinal infection and I have been told that this is typical for CF, too. We have been told that therefore the diagnosis of CF has been proven. I have read that many CF-patients have Hippocratic nails, I have seen them in my daughter. I have read yesterday that there is another illness which can be compared to CF and has mostly the same symptoms – cartagener syndrome. Can the sweat test also be positive with this syndrome? To be on the safe side we have also done a gene test on the 25 most common mutations – negative. The doctor was of the opinion that she might have a more seldom mutation and did a test on the other 800 mutations – negative. For me it is now the question why the sweat tests have been positive in spite of this??
13.09.2010
Falsification of CF sweat test result?
If our daughter did a sweat test in the hospital while having an infection (pneumonia) and taking cortisone and inhaling salbutamol, will the test result (which was negative in our case) be falsified? We heard that an infection and various drugs can skew the sweat test result. Our pediatrician says this is true, but then the result would be shifted towards the positive and not at all be negative. A second opinion said yes, but it could generally be falsified in both directions (positive as well as negative)?!? Which one is right???
13.09.2010
Pregnancy and cortisone
Hello, I am im my 33rd week of pregnancy and have a 5-year-old daughter with CF. We did not check whether our unborn child has CF too. I have been given Urbason® (Methylprednisolone) intravenously (60 mg) and have to take Deltacortene® (Prednisone) for three days due to allergic asthma. Could this have negative effects on a potential CF with our unborn child? The gynecologist said that cortisone is not harmful at all, but I would like to get a second opinion nevertheless. Many, many thanks.
09.09.2010
Mild/atypical cystic fibrosis
Dear expert team, our daughter was diagnosed with the R553x/IVS8-5T-TG12 mutations. QUESTION: Is there a difference between atypical and mild cystic fibrosis? Many thanks.
09.09.2010
Slight CFTR dysfunction
Hello, Many thanks for your answer concerning the R553x/IVS8-5T-TG12 mutations. [Comment: this refers to the question/answer pair “Atypical/mild cystic fibrosis” submitted in April, 2010.] Among other things, you told me that one has to reckon with slight CFTR dysfunctions with these mutations. What exactly does that mean? Many thanks for your answer. Kind regards.
09.09.2010
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