Topics

How confident is the genetic testing
Hello, I have a 13-year-old daughter. The sweat test had been pathologic according to the report from the hospital. She has had a value of 66. After that, a genetic testing had been performed. This was negative. How confident is it that she does not suffer from CF. Best regards,
02.12.2013
Escherichia coli
Dear ladies and gentlemen, Echerichia coli has been found on my tonsils. I have to have my tonsils removed now, as it has not disappeared with the antibiotics. I would like to know, if Escherichia coli can be transmitted via oral sex with the partner, because I do not have any other complaints such as diarrhea. Is there the possibilitiy that the bacterium has infected my tonsils via not toroughly washed fruits and vegetables? With best regards and many thanks
02.12.2013
7T and 9T genetic carrier?
Dear expert team, I received a normal result from a gene test. The assessment states “heterozygous for 7T and 9T (normal alleles).” Does this mean I am genetically healthy or a genetic carrier for CF? Many thanks for your help.
27.11.2013
aspergillus
Hello, We are going to move in a house that we are going to renew (breaking of walls, paintings, stone floors,....) How long do you recommend us to wait before installing us after works with our 18-month-old daughter? Thank you for your answer.
26.11.2013
Sleep apnea?
For a long time (several years) I "buzz" when I fall asleep or while I am sleeping. It deals with a kind of groaning noise, when I am woken up I often remember to have just had some talks in my dreams. Until now I thought this was due to the lively dreaming, however I have come across the sleep apnea while googling the symptoms. As it is when googling symptoms, I also recognize myself in some others of the mentioned ones. Is there a known correlation between CF (I am CF patient) and sleep apnea? Adenoids are only slightly present, the tonsils however are present and very large.
26.11.2013
pseudomonas treatment
Dear ECORN Experts, I have a 5 years daughter. Here where I live we do not have a cf specialist so we go to another country for controls. She was diagnosed with cf at 1 one month. Her sputum test came back positive for PA (Pseudomonas aeruginosa) for the first time on January this year. We started therapy oral ciprofloxacin 4 weeks and inhaled colistin untill she had three negative sputum tests. Since the results were negative we stopped inhaling colistin, but in July the sputum test was again positive. We did oral cipro for 6 weeks and again started inhaling colistin. Then in September it was again positive and now she will be on oral cipro for 3 months and continue inhaling colistin. Our dr told us that she has to be on inhaled colistine for all her life. I was reading another treatments and I see that sometimes the I.v. therapy is recommended. Do you think that we should maybe try I.V. therapy before deciding to put her on lifelong colistin, because we are buying it and it is becoming very hard for us? thank you in advance
26.11.2013
Diagnosis? Addition!
My grandson has the following result of the genetic tetsing: heterozygous TG10/TG12 and heterozygous for the 5T variant IVS8:TG12-5T/TG10-7T in the poly pyrimidin-tract. We have been told that a CF could be excluded to 90%. However, what about the meconium plug at the beginning and then about the 3 weeks of ileus? The little one has been 2 months old yesterday and is again in the hospital. Do you advise us to go to a specialized clinic? Stool release is still a bit difficult. It has become a bit better after Kreon®. The pancreatic elastase has been tested 4 times and was normal all the times, as well as 3 sweat tests have been normal. Can a CF now be excluded? Thank you very much.
20.11.2013
Usage of Sinupret®
Dear ladies and gentlemen, the company Bionorica advertises its preparation Sinupret® (here especially Sinupret extract®) that it positively influences the CFTR-channels of the airway mucosa in healthy people suffering from an acute or also chronic rhinossinusitis. Namely in the way that the mucociliary clearance would improve because of liquefaction of the viscous brine phase on the inflammed mucosa. What is the situation like in CF patients? Can somebody who has e.g. a reduced numer or a reduced acitivty of these channels profit from a long-term intake of Sinupret® (my pharmacist assumed this)? Is there any experience on this? Thank you for your answer and best regards
20.11.2013
Appointments at the CF-center: which controls should be done?
Hello! Our child (7 years, CF, underweight) has an appointment at the CF-center every 3 months. Auscultation of the lung is always done and a swab is taken (according to the infection even more often), once a year the blood is controlled. After first infection with Pseudomonas with i.v. therapy and tobramycin inhalation our child is PA negative again and in a stable health condition. Aspergillus antibodies have been detected in the blood, as well as again and again Staph. aureus in the swab. My sorrows and question is now, if we probably miss something if no lung function measurment or thorax x-ray is performed, respecitvely which investigations have to be done regularly in order to get everything? Many thanks.
18.11.2013
Mild cystic fibrosis
What is the incidence of a mild cystic fibrosis? Is the prognosis for survival concerned? What is the future? (My daughter is 8 years old).
18.11.2013
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