Topics

Asbestos
Hello, We are parents of a girl with CF, aged 2 years. We will move soon and have discovered that the roof of a house extension (7m2) is covered with corrugated fiber cement containing asbestos as well as a vent in the attic. The diagnosis shows that it is in good condition, but we wonder if we still need to remove it (of course by an approved company) or if a formwork may be sufficient. Thank you for your response. Best regards.
26.03.2013
Mutation carrier and pregnancy
I am 18 weeks pregnant (normal conception) and read about CF in the Internet. My gynecologist did not prescribe the relative test because he thought it was unnecessary. I did it, nonetheless, and the results were positive for 7t/7t and negative for the other 49 mutations. My gynecologist recommended that my husband should be tested as well, but he thought that the danger for the baby to have CF was improbable because my husband had to have the exact same mutation as I. We are expecting the results, but by reading the Ecorn site I realized that if both parents are carriers of a CF mutation then the baby may have CF, even if the mutations are not the same. If my husband is a carrier, do I have to do an amniocentesis?
25.03.2013
Rare mutations of CF in pregnancy
I am 18 weeks pregnant and carry the mutation.Arg31Cys (c.91>T), while my husband is carrier of the mutation p.Tyr301Cys. I am going to have an amniocentesis. Could you give me some information about these mutations? If the embryo inherits both of them is there any data about if and how will CF present?
25.03.2013
Pseudomonas
My son is 4,5 years old and is sensitive to bronchitis and bronchiolitis since he was one year old. Recently he was detected with pseudomonas. His case does not appear to be cystic fibrosis, since he is a very tall and heavy child (118 cm tall – weighs 27 kg). The results from the amniocentesis during the pregnancy and from the screening test after birth were negative for CF. Despite all this, we are going to recheck the sputum culture and I believe the results will be positive for pseudomonas again (we are still waiting) and the doctor urges us to do a sweat test. How worried should we by the presence of pseudomonas in the lungs in a person without CF? Our doctor recommends a bronchoscopy but I have reservations. Thank you.
25.03.2013
Borderline sweat test
My four year old son has low growth issues. His height is 1.03, his weight 15.8 kgr. In height he is in the same percentile consistently, whereas he has dropped from the 75th to the 25th weight percentile. He has been ill 4 times with a viral infection. He has never taken inhaled medicines and just one antibiotics. In each case he had cough and sputum, and the last time the cough lasted a month with no other symptoms. We did a general stool test with negative results. As a newborn we did an IRT test, which came out negative (45.5). Our paediatrician rules out the possibility for CF and thinks that the low weight is due to the fact that the boy does not eat much. The blood tests were within normal limits. The only raised value was 13 for eosinophiles. An allergy to milk was detected as well. The first sweat test was 44, the second 30.5 but we were told that there was not much sweat. They recommended a retest after a month. I would like to ask what do you think about the possibility of CF?
25.03.2013
Administration of Bronchitol®
Hello, I tried Bronchitol® (active substance: mannitol) and I am rather content. However, the daily inhalation is very exhausting and time-consuming, as I have to vomit frequently at this due to the disgusting taste. This has not gotten better even after several weeks of usage. I asked in the CF-center if it would not be possible to take the drug either a) according to the need (thus in case of an increasing amount of mucus) or b) half of the dosage, thus 5 capsules in the mornings, 5 in the evenings. What is your opinion about this?
25.03.2013
Kaleydeco® off-label
Dear expert team, in the USA Kaleydeco® (active substance Ivacaftor) is already used "off-label". Patients report about positive experiences in spite of the fact that there is not the so-called celtic mutation underlying. What are the chances that one can receive in Germany the drug for the mutation deltaF508? The market authorization process for the combination preparation after the termination of the 3rd test phase will for sure still last a longer time and I want to protect my children of unnecessary lung damage, insofar Kaleydeco® can even only approximatley have a positive influence on the course of the disease. Many thanks in advance for the answer to my question.
25.03.2013
Pulmozyme® Abdominal Pain
When my daughter does her breathing treatment with Pulmozyme® (active agent rhDNAse) she gets bad stomach pain. She doubles over in pain and it is hard to watch. When the Pulmozyme® is done it goes away. This happens every day, and I am just at a loss. She is crying and miserable. We use a mask when doing her treatments, so I do not know if that makes more of the drug enter the GI system or what. Are there in adverse events with Pulmozyme® that relate to abdominal pain?
25.03.2013
Preparation for school
All children when they go to school for the first time have to adapt and come in contact with many infections. Is it true that in their first year at school they come across a virus every 15 days? Do the children with CF produce antibodies, or is it always for them like the first year? Is it an issue if we do not have the time to do the physiotherapy in the mornings and do it in the afternoon and at nights? Is it better to expose a child with CF from an early age to people of various ages, so getting used to the infections by the time it is 4-5 years old, in order not to miss on school? If the child is continuously ill do we postpone schooling for next year or do we let it in order to adapt?
25.03.2013
Possibility for CF
My son is four years old and did a blood test for CF when he was born, which came out negative. He is a happy, energetic child and has been ill only 4-5 times with fever and cough. However, his growth is not normal. He has dropped from the 75th percentile to the 25th. The allergologist recommended some tests and we found that he has some kind of milk intolerance. We did a stool test and microscopically it was clean. However, the doctor recommended that we do a sweat test, which worried me a lot. Is there a chance that my son may have CF, although the test at birth was negative? What do you think?
25.03.2013
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