ecorn-cf: App. question list

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N1303K mutation: Hello, I have a question. Although I am aware that the course of illness is different for each mutation, I would like to know how the course will be roughly with the N1303K mutation. My daughter is three years old and has not had any lung problems so far, except that she gets exhausted quickly. We are taking Creon® (pancrelipase) and Ursofalk® (ursodiol) and are inhaling with 6% saline solution. I also noticed that her heart is not beating rhythmically. We went to the doctor and he suggested a 24-hour ECG. Could she already be getting heart problems and how should this be treated? Is a 24-hour ECG sufficient? Thank you!; 16.01.2012

DeltaF508 carrier: Hello, I have a son with CF and am a DeltaF508 carrier. I have severe mucus obstruction problems – both in the upper respiratory tract and gynaecological – with constant infections and frequent flatulence/stomach ache. I was already diagnosed with “hypersensitive brochial system” with significant values. I was prescribed an asthma spray even though I do not have asthma. My sweat test is negative. I was told that it is impossible for me to have CF. I nevertheless think that my medical troubles – which, by the way, are present in a direct line in my family tree without CF ever having been noticed – are related to the DeltaF508 gene. I also think that there is still considerable need for research. Is there a study I can participate in?; 16.01.2012

cf assosiations in Greece: I am a mother, used to fighting. One of my children has CF. It is still young and the problems are few for now. There are days, however, that I do not feel strong. I think why this thing had to happen to me, why must my child and my family pay for a medical mistake, how can I make my child strong to fight the disease, when I feel so week before death. It is very difficult for a mother to raise a child with an expiration date. What can you say about it all? Is there a way to get support through the internet? Will the global financial crisis affect the research for the cure of CF?; 12.01.2012

Sweat test: Hello, The sweat test result of my daughter is very high (above 250). I thought I read that above 150 it could be a technical error. What it really? Are such results common?; 12.01.2012

Siblings – yes or no?: Hello, our daughter (CF patient, very good and stable course of illness so far) is now two years old and will start kindergarten in April. We had originally planned to have two or three children. After the diagnosis about two years ago, this was not really an issue for some time. In the meantime, however, we think it would be possible to risk having a further child… Our daughter has the Delta F508 and G542X mutations. What do you think about family enlargement? Getting a further opinion would certainly be helpful in making a decision. Many thanks and kind regards. PS If I look at our daughter’s development, I cannot understand that CF falls under the Pre-implantation diagnostics law…; 12.01.2012

Pets: Is it necesary for a CF patient to take extra measurements and for instance not have dogs ?; 10.01.2012

Acute oesophageal pain: Hello, My daughter who is 14 often complains about severe pain of the lower esophagus that lasts a few minutes. The pain is sudden and without warning signs, its intensity is such that she can not breathe well as if she received a shot in the stomach. It lasts a few minutes. The occurrence of this fact is not stress-related. The Doctor who follows my daughter has prescribed two capsules of Omperazole®. The problem is that she is not serene anymore, she fears that the pain occurs at any time. I am expecting with all my heart a reply from you. Thank you.; 10.01.2012

physiotherapy for a 15 year old teenager: I would like to know which is the most effective and safe physiotherapy technique for a 15 year old boy with CF. I read somewhere that we must not perform clapping and shaking because they may cause pneumothorax or several other complications. Do breaths suffice? Which is your opinion about the vest?; 10.01.2012

nasal potential difference measurement: What tests can be done to determine the severity of the disease? Where it canbe performed measurement of nasal potential difference and what is the correlation between disease severity and this analysis?; 04.01.2012

Essential oils: Hello, we have just received an essential oil diffuser for Christmas. Our baby has cystic fibrosis, do you think we can use it. Could this be irritating?; 03.01.2012