Topics

CF and RhDNase
Hello, I have previously read the question and the response on this topic (November 2010, Pr JC Dubus). I am the grandfather of a 6 years and 10 months old CF girl followed-up in a CF centre. Whereas everything was OK and the lungs were clean on the chest X-ray, she started a RhDNase treatment on ...
16.04.2013
Henoch-Schoenlein purpura as reaction to Pulmozyme®?
Dear experts, our daughter, 9 years old, is in a good general condition. However, she just had a common cold. Her immune system reacted normally, the fever disappeared after one day, then for 2 days increased temperature. She also had a strong cough in the upper area, no bronchitis, the lungs were ...
16.04.2013
antibiotic treatment
My CF child has already had 5 Port-A-Caths (PAC), 4 of them were removed because of infectious problems. The last one was really the last one because all his vascular network was totally sclerosed. Unfortunately, this PAC has been moved accidently by his school teacher and it was also removed. ...
26.03.2013
Administration of Bronchitol®
Hello, I tried Bronchitol® (active substance: mannitol) and I am rather content. However, the daily inhalation is very exhausting and time-consuming, as I have to vomit frequently at this due to the disgusting taste. This has not gotten better even after several weeks of usage. I asked in the ...
25.03.2013
Pulmozyme® Abdominal Pain
When my daughter does her breathing treatment with Pulmozyme® (active agent rhDNAse) she gets bad stomach pain. She doubles over in pain and it is hard to watch. When the Pulmozyme® is done it goes away. This happens every day, and I am just at a loss. She is crying and miserable. We use a ...
25.03.2013
Equipment
We live in Canada and we will spend a holiday in Nice [France], and we need to rent a nebulizer and a compression machine (this is the name given in Canada). Do you know where and how we can rent this equipment?
15.03.2013
Tolerability of Cayston®
Hello, I have CF and asthma and therefore I inhale Cayston® (Aztreonam lysine) every second month (intolerability of Tobi® (Tobramycin inhalation solution) and Colistin)). I tolerate Cayston® better but only if I dissolve it with 0.9% NaCl and not with 0.17% sodium chloride solution enclosed ...
14.03.2013
Bronchitol®
Hello, I would like to know if Bronchitol® (Mannitol) is finally available in France and if the study for children older than 6 years has given positive results. Thank you
04.03.2013
Eradication of Pseudomonas aeruginosa infection
My daughter cultured Pa at the last clinic visit. She was symptom free. The doctor prescribed 28 days of inhaled Antibiotic, and I asked to add an oral antipseudomonal, but she would not. Finished the 28 day cycle, and a week later my daughter has a raging lung infection and now pneumonia. I ...
04.03.2013
Mucolytics - do they make sense for infants?
Hello, We have a 4-year-old daughter with CF. For 3.5 years she gets 2 x 2,5 ml ACC (Acetylcysteine) daily (if there is more mucus a bit more). We are asking ourselves if it really makes sense to administer ACC on a daily basis. Our general practicioner said once that it would be good to ...
26.02.2013
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