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Topics
- Combination of mutations and impact on the child
- My husband carries the DF508 mutation and the normal genotype 9T/9T/. I carry in heterozygote status the allele TG11 - 5T at intron 8 of the CFTR gene as well as the normal genotype 5T/7T/. My son carries the allele TG11 - 5T at intron 8 and is characterized as a carrier of a mild CF mutation. What problems can this cause and what should we do now that I am 4 months pregnant?
- 17.12.2013
- Sweat test
- I have a premature baby girl, with a gestation period of 28 weeks and birth weight of 600 gr. Today she is 13 months old and weighs 5,2 kgr and is allergic to cow milk and has gastro-oesophageal reflux. She gains round 250 gr per month. The pediatrician recommended a sweat test to rule out CF. I was tested negative for the DF508 mutation, I did amniocentesis and the baby was tested in the ICU for CF with negative results. I am very anxious and I would like to know what you think. I forgot to tell you that the symptoms due to the bronchopulmonary dysplasia have vanished now. The baby was in the premature ICU for five months.
- 17.12.2013
- Sweat test
- My child is 5.5 years old and sweats too much while sleeping. I have to change clothes 5-6 times a night. I change his clothes and after 10 minutes he is soaking wet. That is why he has frequent coughing and sputum. He started sweating after the age of 3. Up to the age of 3 he had no medication, not even paracetamol. Should we do a sweat test? I, his mother, am a CF carrier at 80% of mutations and his father is negative for CF mutations at 80%.
- 17.12.2013
- smoking passively
- Dear questioner, We have an 8-year-old son with CF. We are both non-smokers. But my father lives since recent time with a smoking woman. Because he takes care a lot of our son, I worry because every time he comes back from my father, our son smells like cigarette smoke allover. We have spoken about this with them but according to them it can do no harm because she smokes in another room. But the apartment is filled with smoke from previous cigarettes. I would like to have your opinion on this because I do not think this is ok. Then I can tell my father about your opinion because he does not listen to us and it gets a bit tensed in our family. Thanks for your reply.
- 17.12.2013
- Cayston®
- Dear expert team, I inhale for more than one year Cayston® (Aztreonam), as the company indicated 28 days of inhalation, then 28 days pause. My physician in the CF center told me now to inhale Cayston® without pause. Are there any studies, yet, if this could probably lead to an overdosage? Yours sincerely, C.B.
- 17.12.2013
- Do edemas burden the liver additionally in case of CF?
- Dear ladies and gentlemen, many thanks in advance for your human commitment and your expert advice! I have probably an exceptional however a very uncomfortable and important question: Do regluar self-caused edemas, especially in my case at the penis shaft, burden the liver (in case of existing liver problems)? Background: I have CF and liver involvement (beginning liver cirrhosis, however with still completely normal blood and liver values) and concerning sex, I depend on so-called penis pumps due to an erectile dysfunction. By this, often an edema of the whole penis is developing, that subsides slowly after 12 hours. This does not cause any pain, nor does disturb me. I have however fear, that the removal of the water storage respectively the 30 minutes blood stasis in the penis shaft stresses the liver and by this probably burdens it? Or is the liver not involved at all in this and I am worrying totally for nothing? I do not know and have great shame to adress my CF center, that does know me from childhood on and ask about this. I thank you in advance for your answer!!! Best regards, R.
- 17.12.2013
- Problems with teeth
- My daughter, 2 years old, has extreme problems with her upper teeth. They are very thin, begin to break out. Can this also be related to the disease? Where can I get guidelines for dentists without experience in CF from? We have great fear to visit a doctor, as she already has extreme fear rather a phobia of all doctors. She cries and cries and cries. Many thanks and best regards,
- 17.12.2013
- Hyperchogenic bowel
- I am 39 years old and mother of a 20 month old boy by IVF. The test for CF was negative. Today I am 23 weeks pregnant and after the second level ultrasound a hyperechogenic bowel was found. My doctor recommended amniocentesis. Is the hyperechogenic bowel on its own an indication for Down syndrome? Do you believe I should have the amniocentesis?
- 17.12.2013
- Modifier genes
- Hello, could you tell me what are the cystic fibrosis modifier genes? Do we know how to identify them if necessary? If yes, could you give me some examples of modifier genes? Thank you
- 16.12.2013
- Delical® (food supplements for enrichment in calories and/or proteins)
- Hello I' ashamed to ask this question but I really thought I had another box. Actually, no: I will be not able to give him today [his food supplements] because it's sunday. Is it serious??? Expected response. I feel bad for my neglect, but I was so sure! cordially
- 16.12.2013
