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IRT neonatal screening
Dear expert team, our 12-month-old daughter is a little bit underweight (8 kg, 74 cm). She was born in the 36th week of pregnancy (2.150 grams). Neonatal screening was done and the IRT [immunoreactive trypsinogen] was examined which was inconspicuous. One week after birth the test was repeated and these values were inconspicuous as well. Since our daughter is such a lightweight I am worried and ask myself if cystic fibrosis can be excluded with this test. Until now, she has no bronchitis or diarrhea. Many thanks for your answer. Best regards.
17.09.2012
Cystic Fibrosis?
Hello, information that I found in the internet has made me think that I might have a mild form of CF. My personal data: 28 years old, female Since childhood recurring infections like sinusitis, bronchitis, pneumoniae & Otitis media. Once I had a myocarditis with a short stay at the hospital.During infancy I was diagnosed with allergic Asthma bronchiale and exercise-induced asthma and I have to take medication regularly for this reason. I have never tolerated fatty food well, it caused diarrhea and gall problems (rising bile). At age 11, tonsillectomy (TE) operation where also polyps where removed since I had chronic anginas with very enlarged tonsils. Since I was about 16 I was underweight, now my BMI is normal. I have never experienced to feel completely well and according to my mother I have been ill permanently. Personally, I think, this is not such a big problem but I am just not as high-capacity as other women of my age. Especially, I am having problems with being tired and exhausted all the time. Currently I just had a lateral pharyngitis with starting bronchitis and strong sinusitis which was treated with antibiotics. Only the second antibiotic had an effect after 1,5 weeks. I sweat very much since I remember and during infections I do sweat in such an extreme manner that I have to change the bedclothes in the morning. Fresh sweat tastes very salty. I drink three litre daily (minimum) and eat pretty salty since I have the feeling that I need it. Due to the current sinusitis my general practicioner referred me to the ENT-specialist after 2 weeks. He seemed concerned when he heard that I was operated three times for this reason (2 times widening of the paranasal sinuses & operation of the nasal septum). He said that there has to be a reason that I am still having a chronic sinusitis despite the operations and the medication. He wants to have a CT done once the swelling has gone down and then decide if another operation would be necessary. Reading up on chronic sinusitis, I now found that unsuccessful treatment can be a sign of CF. Now I am seriously worried, since my second cousin was diagnosed with CF only as an adult and died of it before turning 30. On the one hand, I do not want to come across as a hypochondriac; as it is, I hardly go to the doctor and try to do a lot with alternative medicine, but there are limits to that, after all… Now my question: Do you as an expert team think that the symptoms I am describing could point to CF, or am I being too subjective? Is a sweat test sensible in your opinion, or is that taking it too far? Many thanks in advance for your effort, time and answer! Kind regards. PS: Apologies for the lengthy message!
11.09.2012
Mucoclear® (6% hypertonic saline)
When Mucoclear® (4 ml of 6% hypertonic saline) is nebulized with an e-Flow rapid, there is a residual volume of 1 ml in the device. So, at the best, only 3 ml are inhaled, and a certain quantity of drug is also lost during the expiration. Do you think that it could be better to nebulize 2 doses of Mucoclear (4 ml x 2) to be sure to receive 4 ml into the lungs, or does it change nothing?
11.09.2012
Nasal irrigation
Do CF patients still have to use sterile salt water for nasal irrigation? After all, if we boil water for this, it has to cool down for at least 20 minutes; but during this time germs will form again!?!
11.09.2012
Nontuberculous mycobacteria and transplantation
Hello, I have CF and I have been colonized with Mycobacterium abscessus for the past three years. I have been previously told that M. abscessus colonization was a contra-indication to transplantation. Why? Recently, more and more centers accept to perform lung transplantation in patients colonized with M. abscessus. What has changed during recent years? Is there any statistics related to post-transplant survival under these circumstances?
11.09.2012
Precautions and risk of contamination at the dentist
Hello, are there any health precautions to take when you visit the dentist? What are the recommendations to give to the practitioner? Thank you
11.09.2012
Ataluren with stop mutation R1162X
Unfortunately the latest results that were published at the CF congress in Dublin are not really convincing. I have the following question nevertheless: Is it true that the R1162X stop mutation is suited very well or at least better than other stop mutations for therapy with Ataluren? Were any distinctions made between the various stop mutations, and were they also analyzed? Many thanks for your answer!
11.09.2012
MRSA findings
Hello, I have been MRSA positive since 2010 but it is not harmful in my case. After two eradication attempts with Vancomycin (oral) which did not show any effect the bacteria has not been treated anymore. I never had an i.v., and swabs of skin and nose were never taken in my CF center either; the findings were only confirmed by sputum samples. Due to an ambulant operation in another hospital this was done subsequently: nose and skin were negative, only in the throat MRSA was detected. I bought Octenidol® (Octenidine dihydrochloride) immediately and have been gargling regurlarly. Where is the germ located most likely…? In the throat and therefore the sputum samples are contaminated? Or is it rather located in the lung and the germ comes to the throat by coughing up sputum? Is it possible that a professional dental cleaning would help? I would like to go to a rehabilitation center very much.
11.09.2012
Why are Ataluren results considered disappointing?
[In this Q/A two questions were summerized as the given answer was the same, both questions can be read here] Hello, I read about the phase-III study on Ataluren as well as the PTC press release on the website of the German CF patient association, and I do not really understand why the results are considered disappointing. In the group of patients not inhaling antibiotics, the decline in lung function with administration of Ataluren over a one-year period was only at 0.2%, as compared to 7% with placebo. After all, this means that for these patients, their otherwise gradual decline in lung function has come to a standstill (at least for the time of the study). Provided that the patient is not dependent on permanent antibiotics inhalation, this can, after all, make the difference between normal and reduced life expectancy! Could you tell me why the assessment in the report on the website is so decidedly negative nevertheless? Do you know what the next steps are in the development of Ataluren and in how far the developers are aiming at a quick approval? ------------------------------------------------------------------------------------------- Another questioner asked the following question on the same topic: Dear expert team, I would be interested to know what the status quo is concerning the approval of Ataluren. A report I read said it will not be approved now or ever!!, since the results of the phase-III study did not meet the expectations. I cannot find anything on the web about this – neither that it will not be approved nor that the results were not sufficient – not even the PTC website provides any information – only concerning Duchenne muscular dystrophy, for which things do not look so bad I believe. I would also be interested to know whether this drug will then not be approved at all – or whether it will be different in each country and how one can find out about this? My daughter has the f508del and R1162X mutations. Many thanks in advance and kind regards.
11.09.2012
Mycosis
I would like to understand and know why I have freuqently vaginal yeast infections or a lot of vaginal discharge. Is it due to cystic fibrosis ? If yes why and how to avoid it. When I take antibiotics it happens to me, but right now this is not the case. Thank you in advance. Sincerely,
11.09.2012
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