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- ABPA_Aspergillus
- accompanying diseases
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Topics
- gastrojejunostomy
- Hello, my 5 month old daughter has a naso duodenal tube since mid December (at first naso gastric), because she had a low growth, while taking weight, now the doctors discuss about gastrojejunostomy while her weight for height ratio is good, 5.200kg for 58 cm, I would like to know what are the advantages and disadvantages of the tube and the gastrojejunostomy and if there is no alternative less aggressive? thank you
- 22.03.2012
- Physiotherapy and pneumothorax
- Can you practice physiotherapy sessions in case of a pneumothorax drained? If so, can it have adverse effects (make the drain bubble)?
- 22.03.2012
- mutations database
- Hello, We are the parents of a 7 month old CF girl, who has 2 CFTR mutations: p.W1204X and p.I507del. We understood that they were rare mutations. We know that there is a database gathering several CFTR mutations and giving information on the phenotype related to such mutations. Is there any possibility for families to have access to these databases? We would like to know how are the patients with 2 mutations identical to our baby. Regards
- 22.03.2012
- treatments
- In which situations can anti-inflammatory drugs (steroidal or non-steroidal) be used to treat cystic fibrosis (CF)?
- 22.03.2012
- Lung Clearance Index-European location
- Dear questioner, First of all thank you for your prompt answer. I am interested in taking the Lung Clearance Index test in a European country where we can comunicate in english/french and where it isn’t so expensive. I am thinking first of Vienna or Spain (if we can comunicate in english) or somewere in France. It is important that they accept foreign patients. Thank you. Happy holidays.
- 22.03.2012
- amniocentesis
- Hello, I had a son diagnosed with CF (homozygot delta F508). If we decide to have another child, will the amniocentesis test all the chromosomes or just the chromosome responsible for CF. Is it possible that we, the parents, might have other mutations besides deltaF508? How many mutations exist in CF? Is the deltaF508 the most severe? At what gestational age do we have to take this test and how long does it take before we know the result?
- 22.03.2012
- cystic fibrosis
- What are the chances of survival or rehabilitation for my 6 month old boy, if he is alway in the hospital and his status is worsening every day. Some people tell me one thing, others tell me a differrent thing and I don’t know what to think anymore. Please write to me.
- 22.03.2012
- Kreon and pancreatic sufficiency
- Our child is a heterozygot for deltaF508 and R1070W, with minimum clinical manifestation so far (pancreatic sufficiency, no pulmonary complications, just episodes of severe dehydration). At 3 years of age he weighs 15 kg and is 102 cm tall, he has solid, normal stools. He never recieved Kreon or other pancreatic enzymes. In this case, of pancreatic sufficiency established by pancreatic elastase, should we administer Kreon or other pancreatic enzymes? What about vitamins A, D, E, K supplement? Thank you very much for your answers.
- 22.03.2012
- mutation classes and effects
- My daughter has a h1054d, often classified in articles as a missense class 4 mutation. Her 2nd mutation is 4021inst. I have been told that it was a frameshift mutation. In my web researches, frameshift mutations are said to be class 1 mutations. Mutations 2, 3 and 4 are always missense mutations: am-I right? I do not rely completely on the web, even if the papers I read were in French and English. Moreover, the gene has 2 different mutations. How does the cell deal with the CFTR production process? It produces a troncated protein that is eliminated because it’s not well synthesized (thanks to the class 4 mutation) or/and it produces a defective protein because of the class 4? How does the cell know what to do? Thanks for your help, regards.
- 22.03.2012
- Ivacaftor US
- Hello, the drug Ivacaftor is now being marketed in the United States, is it prescribed routinely to all carriers of the mutation in question? Is it going to be the same in France when it has his license? When can we have details of the concrete effects (hopefully very beneficial) in patients and possibly talk about a therapeutic revolution if any?
- 22.03.2012
