Topics

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
5-year-old daughter, sweat test elevated?
Hello, I have been with my 5-year-old daughter yesterday to the sweat test, because she is permanently ill. She has been ill this winter 7 times in 3 months always with over 40 fever. The sweat test showed a result of 48 mmol/l. The nurse in the hospital said that everything was o.k. and we need not to come anymore. However, now I have read before the test, that values above 30-40 mmol/l have to be controlled. Now I am concerned, as in the doctors' letter totally different reference values are mentioned. There the borderline region is only above 60 mmol/l and certainly positive would be above 90 mmol/l. Can the reference values vary or is it due to different measuring devices?
18.06.2009
Allergy to antibiotics / penecillin and cephalosporine
Hello, I want to ask a question about an allergy to the group of penecillin antibiotics and cephalosporine antibiotics. 3 years ago I took piperacillin plus tazobactam and after 5 days I got an allergy of the skin (it started itching). One month ago I got Cefepim and after the first dose after 3-5 minutes my hands got red and itched. The doctor stated an allergy of the skin. Blood has been taken from me, but in the laboratory no allergy to penecillin and cephalosporine antibiotics had been found (the specific IgE was negative). I want to ask if it is inevitable that I have an allergy against the whole group of penecillin antibiotics and cephalosporine antibiotics or can it be, that I have only an allergy to the 2 concrete antibiotic drugs. Is it not possible that I have an allergy to the additives? Is there an investigation which can find that out? How can we find it out because it is a really broad scale of antibiotics, which I will need certainly. Many thanks.
18.06.2009
Permanent fever!
Hello, the daughter of my nice has been diagnosed with CF recently. The sweat test had been positive 2 times and also the genetic testing. The little one is now 15 months old, did not gain weight anymore in the last months, at the investigations a vitamin D deficiency had been detected, a hypothyreosis, anemia and a reduction of the pancreatic enzyme. She has again and again from time to time spasms of the hands and feet and in the last weeks about every 2-3 days increased temperatures. It is possible that with CF those increased temperatures occur permanently? The doctor in charge at the hospital just did not want to comment on these fever episodes. Can one really assume CF according to the positive sweat test and genetic testing or could there also other illnesses be a possibility? Many thanks
16.06.2009
Permanent therapy with azithromycin
Hello, I am 34 years old, have CF and have a staphylococcus aureus colonization for about 20 years and take antibiotics for 2 years about every 3 months, sometimes ampicillin plus sulbactam, sometimes other. Sometimes other germs occur, however dissapear again. I do not have a Pseudmonas aeruginosa. My FEV1 is at 39% at the moment. Now, my pulmomologist wants me to take azithromycin as a permanent therapy. However I do not really want this. Can you help me in finding a decision? Do you need furhter information about my state of health? Many thanks in advance.
16.06.2009
Blood level of tacrolimus
Dear expert team! After the transplantation my son take as immunosuppressive drugs tacrolimus, cortisone and mycophenolatmofetil (MMF). Is it right that some kinds of food or fruits (grapefruit) influence the blood level? Many thanks in advance.
16.06.2009
Asthma or CF?
Dear ladies and gentlemen, our son xaver (10 years old) has accidentally received a sweat test (pilocarpine ionotophoresis) at an asthma-control check in Wangen (Germany), the result was with 76 mmol/l NaCl borderline. At the appointment for repeating at the southclinic in Nuremberg, the result was confirmed mit 72 mmol Na Cl again. The sole chloride result was 40. For 7 years now, my son receives an asthma therapy (with former salmeterole and fluticasone), he has been on a rehab stay in Davos and to control appointments at the pulmonolgy out-patient department in Erlangen and never a sweat test had been performed for differential diagnosis. Before his asthma career, he had severe atopic eczema (from 2.5 to 3.5 years). His asthma has even improved very much in the last one and a half years, as he does not need a permanent medication anymore. The lung function tests have been always good, he did not have an asthmatic cough (no mucous congestion either) and he did not have any inflammations. The digestion has never been suspicious either. He grows slowly but continously and weighs 27kg at a heigth of 130cm. We are of course upset, that in spite of the positive development of his asthma, now such a shadow lies over the joy about his development. We are still waiting on the result of the stool sample (pancreatic elastin) and the docotor in charge wanted to discuss the x-ray of the lung with the radiologist first, which shows ramifications (scars) in the region of the inner rims. Is it possible that the lung shows changes in spite of permanent, sucessful and continous asthma-therapy? Our question concerning the CF, which has not been confirmed at this timepoint: can CF be in spite of a lack of symptoms and if the symptoms can occur later on and become more and more stronger. The progression is part of the illness, isn't it? We would like to be well informed and prepared, so that important therapies are not missed and he can be helped. Suddenly we are confronted with a new illness, about which our knowledge was very small. We are very happy about this forum, as it is very informative and answers many questions. We are looking worward to your answer
15.06.2009
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