Topics

genetic therapy
Hello, I wanted to have news about research on gene therapy
25.06.2012
Query about the coverage of the cost of drugs
The pharmacist, from whom i get the drugs for my child all these years, has informed me that I have to pay the drugs in advance, deposit the invoices and get my money back after several months. I cannot afford to pay this kind of money every month. What can I do if I need tadim® (colistimethate sodium powder) for my child (315 euros x 2 every month). My social security is OGA
25.06.2012
complete genetic test_pancreas divisum
[coordinators comment: the Q/A presented here is a summary of 3 questions from the same parent; we had a fourth former question from this parent, where in the answer the probability of suffering from CF/CFTR-related disorder or being healthy carrier was discussed in detail. This Q/A can be found under the following link: http://ecorn-cf.eu/index.php?id=65&L=0&tx_expertadvice_pi1[showitem]=1618&tx_expertadvice_pi1[search]=uncertain%20cystic] I bring back a previous subject about an uncertain CF diagnosis, with a few additional informations. My daughter is 11 years old and she was diagnosed in Iasi with CF as a result of two sweat tests (the first – 68, the second - 62). These tests were made after previous fasting (no food and no water), first they collected the blood, they took the X-ray, and they evaluated the pulmonary function and after that she had to eat something and drink some water (all of that happening in maximum 30 minutes). From what I know, the patient must be hydrated for this test. This fall we got, by chance, at Grigore Alexandrescu Hostpital in Bucharest, where she repeated the test using the pilocarpine ionotophoresis method. I mention the fact that the device and method differed from those used in Iasi: they collected the sweat in a small tube and they weighed it and the result was 42. The MRI revealed pancreas divisum and the lungs are fine for the moment (until now she only had rare and mild colds). The doctors in Bucharest infirmed the CF diagnosis. The screening test for mutations revealed polimorphism of IVS8-5T- allele [coordinator put in this information from a former question: intron 8 poly-T-TG: 5T-11TG/7T-11TG]. We payed the complete sequencing CFTR test, performed by PCR, bidirectional sequencing, MLPA. The people at the laboratory we contacted said they are doing the CFTR gene sequencing and this covers 98% of mutations. The tests did not detect any mutations in the CFTR gene, just polymorphisms without clinical relevance, the conclusion was that is unlikely the child has cystic fibrosis. Please advise me what to do in the future about the Pulmozyme? Is it necessary? I remember you that pancreas divisum was diagnosed by MRI. I understand that she should continue the treatment for pancreatic disease but I am confused about Pulmozyme. She did not have any pulmonary disease. Thank you very much for your understanding and patience.
25.06.2012
chronic diarrhea in a 1 year 6 months child
Hello, My son is 1.5 years old and he has many stools (1-2, max 3 per day but this is very rarely) about 6 months. What tests should I make for the diagnosis? I mention that bacteriological examinations were negative. Often chlamydospores of Candida occured in the stool. Stool aspect is pasty brown.
25.06.2012
sweat test
I would like to ask what kind of test is necessary to exclude the possibility of CF in a child. Does the sweat test suffice, and if it is negative should we repeat the test?
12.06.2012
chronic pseudomonas
I cannot understand why my child after the treatment is clean, but after 4-6 months he has pseudomonas again. What are we doing wrong? Can there be something in the environment of the child? What should I pay attention to? We are tired with this situation. I hear about other parents who say that their children are without pseudomonas for two years and I get disappointed. We have not spent one summer free of treatment for the last 4 years. The test we do in June is always positive for pseudomonas.
12.06.2012
chronic pseudomonas
When does one talk about chronic Pseuodomonas? How long does it take to cause gross damage to the lungs?
11.06.2012
drug for pseudomonas
Good evening. I have pseudomonas in my lungs since many years ago. I follow a treatment with tobi® and tadim® (colistimethate sodium powder) interchangeably. Is there a medication that is cheaper than tobi?
11.06.2012
low growth
I have a three year old child with low growth. The sweat test was done in Thessaloniki and it was negative (16), as well as the mutation check for the mother in Laiko Hospital. Are there any other things to do to exclude CF? Thank you.
11.06.2012
sweat test and low growth/failure to thrive
I would like to ask what are the chances for a child to have low growth, a negative sweat test and have CF? What can a parent do to exclude the possibility of the disease? Thank you.
11.06.2012
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