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 the 14th November 2011 at the age of 5.5 years which was stopped 15 days later because of an important cough exacerbation (up to 150 to 200 cough episodes per hour) responsible for a fatigue and headaches. A few time later, the X-ray did not show clean lungs, whereas before the chest X-rays were normal, and a hospitalization was necessary to treat her with intravenous antibiotics during 15 days. In the summer, the chest X-ray was anew abnormal and a second hospitalization was planned in September. Finally, this hospitalization was unnecessary, a treatment with azithromycine (3 days per week) have shown good results. And now everything is OK. I have 2 questions : 1°) Do we know other cases of young children requiring a rapid stop of RhDNase because of such adverse events? 2°) The medical staff wants to prescribe anew the RhDNase, but because of the side effects (cf the cited response of 2010) and the consecutive pulmonary consequences described above (but were they linked to RhDNase?), the parents don’t want to do that because they are afraid to experience again the previous catastrophic scenario for their child. Because of some progresses since the Pr Dubus’s response 2.5 years ago, what do you think about that? Thanks.
16.04.2013
Thoracic distension
Hello, I would like to know what is a thoracic hyperinflation. Could it be cured and what is the cause? How can we diagnose that? Thanks for your response. Sincerely
16.04.2013
use of a spa at home
Can a CF patient bathe in a spa? If yes what are the security requirements? Thank you
16.04.2013
reimbursement of care in England
My 16 year-old daughter will visit England for two weeks. According to the organizers, reimbursements with European health insurance card pertain only for health care provided by a physician but not for a physiotherapist. Could you confirm this?
16.04.2013
Trip to England
Is there an equivalent association for "Vaincre La Mucoviscidose" (the french CF association) in England?
16.04.2013
Thermal bath
Hello, I have a question concerning thermal baths. How is it there with humid-germs, especially the Pseudmonas aeruginosa? Has one actually to expect such germs there due to the salt content of the water? On the other hand, the water is very warm, which are good conditions for the germs. Many thanks for your answer.
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 free on auscultation. The treating hospital already recommended before the infection that our daugther should inhale Pulmozyme® (rh-DNAse). We started the therapy 3 days after disappearance of the fever. First pains in the joints already occured on the evening after. We inhaled for 3 more times. After the second time the red hematoma ressembling spots on the feet appeared and in addition very hard pain in the upper legs and feet. Then we went to the clinic and Henoch-Schoenlein purpura was diagnosed. We were told to go on with inhalation of Pulmozyme®. Is this recommendable? Could it not be that the purpura has been provoked by Pulmozyme®? Thanks for the answers.
16.04.2013
Belly
I have a question, I (16) have per se already a big belly (respectively a bit a big one) due to CF and diabetes. However, now it gets worse, I have quite much air in it.... as it turs out to be worse and worse with the belly (thus bigger and all) this bothers me a lot...can one do something about this?
16.04.2013
Insurances and CF
Can you obtain a life insurance in Holland if you have CF?
10.04.2013
Diagnosis
Hello, I am 39 years old and have 10 years of an undiagnosed complaint that resembles the symptoms of CF. I discussed this with my doctor, who declined this diagnosis. I am smoking. After seeing a tobacco specialist, an ENT, ​​a chest X-ray was made and a CT scan of the sinuses .. still no diagnosis except allergic sensitivity. I want to know who I have to consult for a reliable diagnosis and for considering treatment.
10.04.2013
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