Topics

Yellow-nail-syndrome
Hello, my daughter has the Yellow-nail-syndrome. Is there a connection between CF and the Yellow-nail-syndrome? Many thanks!
25.06.2009
Prophylactic antibiotic therapy
In my son (22 months) the illness of CF is known for nearly one year. Up to now, he has not been especially susceptable for infections. He has had 3 viral infections in the last winter (rhinitis, light obstructive bronchitis, one time with short period of fever). The pediatrician and the CF-clinic agreed, that this had been "only" viral infections without involvement of bacteria. The CF-clinic however tries to persuade me that an antibiotic therapy is prophylactically necessary with a bronchitis even at an obvious viral infection, in order to avoid damage to the lung in any case. In general, I am very cautious with antibiotics, as I have seen in myself but also in familiar children, how antibiotics can destroy the flora of the gut and make the child even more susceptible for the next infection. How are the opinions concerning prophylactic antibiotic therapy? Many thanks in andvance
25.06.2009
Heterozygous state
Dear ladies and gentlemen, I 34 (female) as well as my daughter 7 suffer from CF. My question, in my son (14), CF has been exculded 2 times but why is it written in a doctor's letter (gastroenterologist) "We would recommend additionally a renewed genetic counselling to exclude a compound-heterozygous CF. At the moment there is a heterozygous state, however in the last time some new mutations became known." This heterozygous mutation has been diagnosed in my son (14) in the year 2003. My CF itself has been diagnosed per instance at a human genetic expert when I was 29 years old. Is there a special hospital for human genetics except Gießen and Hannover, that conduct ongoing blood test? Yours sincerely and many thanks,
25.06.2009
Magic wand
Dear ladies and gentlemen, at a well-known and established mail order company I have seen a device, that is supposed to eradicate with allegedly 99,9% with UV-C light bacteria and germs from all surfaces. Allegedly with a high rate of success for Pseudmonas and MRSA. Could that be? That would be a great idea for e.g. keyboards and handys, especially for people working in hospital.... Many thanks for your answer
25.06.2009
Research results
Dear expert team, I have read on an internet side about CF, that there is some research going on with an ingredient of curry, which is thought to have a positive effect when having del508 mutation. As my son (8 months) has this mutation, I am now interested how hopeful this report is respectively how this ingredient leads to an improvement of the CF disease?
25.06.2009
Hyperechogenic fetal bowel
Good evening. I am 22 weeks pregnant and during the routine ultrasonograph the doctor diagnosed hyperechogenic fetal bowel. Without having any positive family history I have been checked at Laiko Hospital, Athens for the 75% of possible cystic fibrosis mutations and the results were negative. How much does the risk for cystic fibrosis increase due to this positive finding after the ultrasonograph? Would you recommend amniocentesis? Thanks in advance!
22.06.2009
Increased amount of sputum and weakness
Hello, I (female, 31) have CF (Pseudomonas colonized) and since some time Aspergillus and the MRSA. For about the last 2 months I cough more and also have much more sputum. I realize also when coughing, that there is more in the lung. Due to the frequent and exhausting coughing I am often very weak and tired. My capability is (compared to my normal circumstances) not as it had been. It has however changed only slightly up to now, but I am very concerned in spite of it. What can be the reasons and what can I do against it? My last lung function (about 3 weeks ago) had been however still o.k., in spite of the fact that I did not feel well either at that time.
22.06.2009
Can the diagnosis be taken back?
Dear expert team, you have already helped me once. Many thanks for that!! In my little son (now nearly 7 months old) CF has been diagnosed via the Newborn Screening. According to the genetic analysis he has two times F508-mutation. He has that with the pancreas and nothing else. He has never had cough until now and no rhinitis and nothing. At the time of the sweat test (when he was 6 weeks old), his hands tasted salty. He has had many stools (nearly 10 times a day, I do exclusively breast-feeding, even upto now) but never voluminous, stinky or fatty. The stools are only looking like this since he takes the Kreon. Isn't that funny? In addition, he has since then only every 7-10 days stool. Because of that I am told to give only half of a spoon before the breast-feeding. Since birth he did gain weight very well. His hands do not taste salty anymore, is it possible, that he has not CF? And what do you advice concerning the Kreon? Probably he does not need it at all? I am very confused right now, because I could not make a sense of it at the last visit at the CF center. Many thanks in advance....
22.06.2009
Distilled water
Hello, it has been recommended to us, to clean the inhalettes only with distilled water. With that one spends the 5l-bottle very quickly...by no later than 4 cleaning procedures it is empty. The insurance does not cover the distilled water. Therefore the question: can one clean also with normal water? Many thanks for your answer.
22.06.2009
PTC 124
MY 8 YEARS OLD DAUGHTER HAS THE FOLLOWING MUTATIONS, DELTA F 508 AND W1282X. IS PTC 124 EFFECTIVE FOR THIS KIND OF MUTATION? AND WHICH ARE THE RESULTS OF THE LAST CLINICAL TRIALS? DO I HAVE SOMETHING TO HOPE FOR?
18.06.2009
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