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Tags
- ABPA_Aspergillus
- accompanying diseases
- air-improving devices
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Topics
- Double heterozygote
- I am pregnant and did a genetic testing for 95% of the CF mutations. The results were negative for any pathological CF mutation except for the polymorphism c.1408Α>G (homozygote). The father underwent the same testing and two pathological mutations were detected (G576A and R668C) and some non pathological polymorphisms. The genetic center characterized the father as double heterozygote. Is there a chance that the baby will inherit only one mutation from the father? Is there any chance that the baby will inherit both mutations from the father? If yes, will the baby be simply a carrier of two mutations and one healthy gene (from me) and will not be in danger of having CF, or will it have CF due to the two mutations?
- 09.04.2013
- Puddles
- Should we be wary of puddles? Can we let our kids jump in puddles? Can you ride through puddles with bikes, strollers ..... ? Thank you.
- 09.04.2013
- Frogs
- Hi. I would like to know if a CF child could eat frogs and snails, knowing that these animals live in water. I think that a large cooking time for snails kills germs but maybe it works much less for frogs? Thank you.
- 09.04.2013
- Bath tub with whirlpool function
- Dear expert team, due to an upcoming renovation of the bathroom I (25, CF, Pseudomonas negative) am thinking about bying a bath tub with whirlpool function. I know, that public whirlpools / jacuzzis are not recommended due to an increased risk of Pseudmonas. Is this danger relevant also for such bath tubs in the home bathroom? Many thanks and best regards, A.
- 09.04.2013
- Living donor organ transplantation of the lung
- Good morning to the expert team, I have read several years ago in the journal of the German CF-patient organization a report about a successful living donor transplantation. In how far is the living donor transplantation of the organ lung an option today? Many greetings and thank you very much.
- 09.04.2013
- Bronchitis and other
- Hello, I am the mother of a little CF girl and want to know if she has to avoid contact with persons having bronchitis or cold or gastroenteritis or may they have a mask in their presence? Thank you
- 26.03.2013
- Avoid sick people
- Hello, Our 7 months old son has Cystic Fibrosis and in times of epidemic influenza, colds and gastro-enteritis, we were advised to avoid our son contact with sick people. To what extent should we consider this advice? Should we refuse to invite people with colds? Should we invite them but they put on a mask? Can we invite them when our son is asleep and therefore not seen or do the microbes stay with us? Should we just avoid people having flu or bronchitis? A person with a runny nose? We want to take all possible precautions for our son but do not go overboard! We thank you warmly.
- 26.03.2013
- Gastric problem
- Hello, My daughter has always stomach problems that have worsened recently. I wonder if an infection in the esophagus (examination in progress) may cause a decrease in breathing because antibiotic treatments for her lungs turn out to be not effective anymore. Thank you.
- 26.03.2013
- KALYDECO®
- KALYDECO® is beneficial for the mutation G551D and some other mutations causing the same problem. I read that the KALYDECO® would neutralize gastric acidity. Am I to understand that this positive effect would apply also to the G551D mutation (and similar mutations) or probably to all patients with CF? Thank you in advance for your answer.
- 26.03.2013
- antibiotic treatment
- My CF child has already had 5 Port-A-Caths (PAC), 4 of them were removed because of infectious problems. The last one was really the last one because all his vascular network was totally sclerosed. Unfortunately, this PAC has been moved accidently by his school teacher and it was also removed. During the last hospitalizations for bronchial infection, the surgeon has successfully put a picc (peripheral inserted central venous catheter) line. He’s now again hospitalized and an attempt to put a picc line was made 3 times at different sites. Because it was impossible, a peripheral vein was searched but with no success. The pediatrician doesn’t want to try again a treatment by a vascular way and proposes a new treatment, not yet validated. All the intravenous treatment is now inhaled with an e-Flow nebulizer. This is the listing of his antibiotics: ceftazidime, IV tobramycin, tobramycin for inhalation, colistin and by an oral route sulfamethoxazole and azitromycin. I am really anxious with such a treatment because we know that in cystic fibrosis intravenous antibiotics are the only treatments with the hope to cure. Do you have other solutions to propose? Thanks.
- 26.03.2013
