Topics

Creon
I am 18 years old and take creon almost regularly. I am surprised, though, that I am not thin, like the other CF patients. I am 153 cm tall/short ;-) and weigh 55kg, and I have a rather plump belly which bothers me. My question: am I taking too much or too little creon?
07.05.2012
IMPACTT protocole
The physician who follows my 15 year old son proposed him to participate in the IMPACTT study (http://impactt.eu/) which is to gargle and then swallow every night a formula enriched with egg yolk Y immunoglobulin. From what I understand, the hens are vaccinated against pyo and produce antibodies that are found in eggs. Several questions: - What are the consequences - risks for the patient to ingest daily egg yolk (allergies, liver effects ....)? - does ingestion of egg yolk containing a form of this strain of germ leads to a risk of contamination? - I usually buy organic eggs to avoid food poisoning (salmonella, viruses ...), are the "research" hens raised in an "organic" farm ? how are the chickens fed and raised ? Thank you for your answers
07.05.2012
Tests for brother and sister
I have three children. The youngest has Cystic Fibrosis. Is it necessary to test the elders who are 6 and 4 years? They have no symptoms and their skin is not salty. Can they declare the disease later ? Cordially.
07.05.2012
Hair dryer
Is it possible to dry my daughter's hair with a hair dryer ? Could that air be harmful ?
07.05.2012
Physiotherapy and inhalation with asthma and CF
[Note: below are two similar questions asked by the same person – the answer refers to both of them.] Physiotherapy with asthma and CF Hello, In the morning, I (female, 43 years old) first inhale Symbicort® (budesonide and formoterol) to open up, then Spiriva® (tiotropium bromide), then Pulmozyme® (dornase alfa) and after 1-2 hours NaCl with 4 drops of Ventolin® (salbutamol). After that, I do PEP (with smallest opening) and white rib belt, and then autogenic drainage in lying position in order to cough up. Altogether, this takes one hour, but I can nevertheless loosen up the secretion only partially and have to do therapy again around noon. This is quite a burden on my daily routine. Perhaps you have an idea what I could do/inhale differently in order to be able to cough up better. I have a lot of sputum and do not tolerate the antibiotics for inhalation, but I rarely have infections. Many thanks and kind regards. ++++++++ Inhalation with asthma and CF Hello, due to severe allergic asthma with CF, I (female, 43 years old) inhale two puffs of Symbicort® (budesonide and formoterol) (6) Turbuhaler three times a day, Spiriva® (tiotropium bromide), and Pulmozyme® (dornase alfa) in the mornings (after Symbicort®). I do not tolerate antibiotics. Before drainage, I additionally inhale NaCl 0.9% with 4 drops of Ventolin® (salbutamol), all of this with the E-flow. I can nevertheless loosen up the secretion only partially in the mornings and have to do therapy again around noon. This is quite a burden on my daily routine. Do you see an option (perhaps inhaling the Ventolin® first in the morning, or a higher dosage; or using a different spray) whereby I would only have to do drainage in the morning and evening? Many thanks.
07.05.2012
Can you get symptoms from cystic fibrosis when you are already an adult?
Can you get symptoms from cystic fibrosis when you are already an adult?
03.05.2012
Lung transplant
Dear physicians, I would like to know whether transplanted lungs get less damaged by tenacious secretions because these are healthy lungs. How is the formation of tenacious mucus after a transplant? Thank you for answering our question.
03.05.2012
CF mutation
Hello, I wonder if the CF mutation 3417 from A to T, can cause the disease CF?
03.05.2012
CF patient- inhalation of Mesna no longer possible
Dear, Mistabron® is no longer available in the pharmacy. I’m worried that my daughter gets worse with hypertonic saline. What is the best to use for CF? My daughter is 6 years old. Thank you.
03.05.2012
Mucus
Good afternoon, My son was born after 25 weeks of gestation. He is now 4 years old and he continues to have problems with his airways. He had pneumonia, he has been admitted to hospital with RS virus when he was 2 years old, he had many airway infections, whooping cough. Now he has been coughing and coughing since April of last year. He took an inhaled corticosteroid and salbutamol but since last week his coughing has worsened. The doctor listened to his lungs and heard wheeze and gave him new treatment. He has somewhat improved but seems to have a lot of secretions that he has trouble coughing up. He is tiny but this is because of his prematurity. His weight is good and I don’t see anything unusual in his stools. Could this still be CF? I wonder whether I should go see a paediatrician and talk about my worries. Thanks for answering this question. A worried mother.
03.05.2012
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