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- ABPA_Aspergillus
- accompanying diseases
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Topics
- Genotype in CF
- My two grandsons (one 18 months, the other 4 years) have CF with genotype F508del (egzon 10) and S466X (egzon 10) in CFTR gen. Can you tell me to which class of mutation belongs S466X and what are the prognosis for the children with this genotype.
- 14.09.2010
- genetics question
- My daughter was found at age three (she is now nine years old) to have the mutations F508 and 711 3a G. At time she has not experienced any significant lung involvement ( a few episodes of bronchitis) and she is pancreatic sufficient. I would like to ask what is the phenotype and the relative progress of these children with these mutations? Is this atypical CF? Is there any information on this second mutation? Thank you
- 14.09.2010
- Querries
- (a) In less than twelve months a baby has undergone sterilization and a few months later is on ciproxin & tadim again. Does this mean that pseudomonas has settled for good and the real pulmonary problems have already started, or is it just symptoms? (b) How much does the medication affect the body in the long term? Apart from the CF related issues, will there arise other problems due to the medications?
- 14.09.2010
- Attestation by doctor is denied
- I am 16 years old and have CF. I will begin secondary school this autumn. I have heard that I have the right to get “färdtjänst” but my doctor does not want to write an attestation since no one in Gothenburg or Lund has “färdtjänst” to school. Is there anyone who has similar problem and how have you solved it?
- 13.09.2010
- Paddling pool (children's pool)
- Would it help to put chlorine tablettes into the water of a paddling pool to leave the water for 2 to 3 days in the pool? Our pools contains 75 L of water and it is merely a question of costs... Many thanks
- 13.09.2010
- New medications
- What is your opinion about pancreaze and aquadeks? Are they available in Greece and have they been used in chlidren? Are they covered by social security? Are they any better?
- 13.09.2010
- Candida albicans
- Can Candida albicans be transmitted from the lungs to the partner by kissing or via other ways?
- 13.09.2010
- Antibiosis treatment standards
- Hello, how do you explain the fact that different clinics follow different treatment strategies? Specific example: i.v. antibiosis regularly or only when needed – see the Danish model. Should one not assume that the standard of knowledge is the same throughout one country, or that after years of different practices it should have become clear by looking at comparative data which method ultimately is the best? For patients, after all, these different views are quite confusing and incomprehensible. Kind regards.
- 13.09.2010
- Creon necessary?
- Hello, our daughter (18 months) has the F508 mutation (homozygous). I am giving her Creon for children, but am playing it by ear. Usually, the exact Creon dosage is calculated precisely for each fatty meal, but that is not necessary for her since she is getting by with very little Creon. When I realize that her stool is rather hard (small little pellets), I even avoid the Creon altogether for the next meal. My question now is: How can that be? Last year her elastase level was 7. After all, this means that the pancreas is hardly working, doesn’t it? And is it allowable for me to not give her Creon every now and then? She never has diarrhoea. Does the reduced amount of Creon influence growth? She is rather small for her age, 73 cm at 17 months (desired weight 101 percent). I have to add, though, that we as parents are only about 1,70 m tall. However, the CF center will check her growth hormones in November. Many thanks and kind regards, A.
- 13.09.2010
- CF possible?
- Is it possible, and I am not expecting a diagnosis, that a 13-year-old girl without pulmonary symptoms, but with two instances of pancreatitis (salt content measurement of 62 mmol/l and 72 mmol/l, respectively) has cystic fibrosis? [Translator's comment: information that is only of local relevance has been omitted from the translation.] Thanks.
- 13.09.2010
