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- accompanying diseases
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Topics
- coughing up blood
- is it serious to be coughing up blood in cystic fibrosis
- 14.01.2010
- Pancreas
- My daughter’s CF was clearly diagnosed by genetic testing, however her case seems to be a borderline case. Should I point out these new circumstances when we go to the next regular check-up in the CF center? In the meantime, her appetite is better again and she complains less frequently about having abdominal pain. Is it possible that the sypmtoms are caused by long-term antibiotic treatment with Zithromax® (azithromycin)? Many thanks.
- 14.01.2010
- Omeprazole
- Do you have any information on the use of omperazole in cystic fibrosis? The dietician for our cystic fibrosis patients has queried whether enteric coated omeprazole can be absorbed from the small intestine due to the altered pH of the small intestine, where the pH is often lower than 5 for prolonged periods. I have exhausted all our resources and hope that you may be able to help me. Thank you
- 11.01.2010
- Patient with CF in Albania
- I am the Nurse Practitioner at the Cf clinic at the Hospital for Sick Children in Toronto, Canada. I had a very distraught couple come to see me in my clinic last week. They are from Albania - living in Canada. They were visiting family this summer and met a family with a 3 month old baby recently diagnosed with CF. My understanding is that they were told that there was not much they could do for the baby and her physician put her on Nutramagen. She is still at her birth weight at age 3 months. She is terribly malnourished and needs treatment. I have seen the genetics and this baby is homozygous for DF508 so the diagnosisi is real. The Canadian couple want to know where this baby can be treated. I was hoping that someone could help me with some suggestions as to where they can go close to Albania. I do not think that there is a CF clinic in Albania. I realize that this is a very poor country with few resources to even feed their population. This couple is mailing them the formula, but it sounds like they really need some enzymes and vitamins for now. Do you have any suggestions for me to pass on to the family here? They want to bring the baby to Canada - but I think they should try to get help closer to home. Looking forward to your answer. Thank you Louise Taylor RN, MN, NP-P Division of Respiratory Medicine Hospital for Sick Children Toronto Ontario CANADA
- 06.01.2010
- prenatal testing
- When I was a pregnant mother of a 2-year-old CF child I underwent in Warsaw in a year 2000 prenatal testing, which revealed the presence of delF508 mutation (it was a sample of trophoblast) in one of the allels - carrier state. After birth the child underwent screening tests toward CF - the result is normal, the chloride level in the sweat is also normal. Regardig the fact, that genetical testing was done in my child before birth, should I perform also genetical tests from blood sample after birth to make sure?
- 05.01.2010
- of fat-soluble vitamins
- We are from Bulgaria. Much like we and our language should be added to your list. My question is: Imer levels of fat soluble vitamins it is free for patients with CF? I ask because even here in Bulgaria we have a laboratory to carry out this operation.
- 05.01.2010
- depression
- My 20-year-old daughter has been in and out of hospital this past year, due to infections. She is getting more and more depressed and has no energy or wish to do anything outside the house. Can you give me advice on how to help her?
- 05.01.2010
- US compatible nebulizer
- We are traveling in France (to visit my mother in law's family) and burned out the motor on our Pari Ultra II nebulizer even using an adapter. We are renting a nebulizer now but wondered if it would be possible to find a nebulizer that would work here but be compatible with US voltage (100-230 volts) for when we get back. Does anyone have any ideas? Thanks in advance for any suggestions given.
- 05.01.2010
- Vertex-770 potentiator
- Dear expert team, my son's genotype is DF508 and R347P. As VX-770 only studies effectiveness in G551D (and DF508) at the moment I wonder what the probability is that this drug also works for other (class III-V) mutations with a certain functionality of the CFTR protein (my son must have some functionality as he is pancreatic sufficient). I guess that further studies have to be done but I would like to understand the working method of the drug and if it can be applied to other mutations. I would also like to understand why the company only focus on one specific mutation. Thank you.
- 05.01.2010
- Pseudomonas in liquid soap or moist toilet paper?
- Is there information about the presence of Pseudomonas in liquid soap or moist toilet paper? However, a piece of soap which is nearly always moist, is even worse? An how about moist toilet paper and moist paper for babies. thanks, greetings V. M.
- 05.01.2010
