Topics

CF?
I am 31 years old and I lately have the feeling that mucus is slipping down from my nose constantly. During the last years I have constantly “colds”, almost chronically “thin”. Searching for an explanation I found CF. I don’t want to, but should I get tested?
27.01.2014
Flutter
Hello, We are about to buy a flutter but we have seen that there are other devices especially GeloMuc®, for example. The price difference is doubled while the devices appear to be the same based on the description we found. Can you tell us the reasons for such a price difference? The GeloMuc® which is twice cheaper than the flutter, is it as effective? The French CF Association tells about the flutter in ist brochure. Thank you.
27.01.2014
Trampoline
Following questions raised previously on the benefit of trampolines, I would like to know: at what age their use is beneficial? Thank you
27.01.2014
Risk of lung function test
Hello, I am 35 years old and due to an unfullfilled wish to have a child a genetic testing has revealed a mutation (F508, a full sequencing will soon be done). Because of my infertility (even if sperm ducts are present) my physician initiated a sweat test. Result 46 (control area). In the department of pulmonology, a lung function test had been performed. At first, there was no pathological finding. Everything was o.k.. As I suffer from allergic asthma, soon a CT of the thorax and an investigation of the upper abdomen is planned. Also blood values and stool are investigated at the moment (vitamins etc.). A further symptom: I have hippocratic nails. Otherwise I feel 100% fit and do not have any restricitons (besides that a nostril is closed chronically for 10 years). All together, an atypical respectively mild CF?! At the moment, nobody knows anything precise. To my question: I have read that there is a risk of getting infected with a dangerous germ at a lung function test in a specialized center. These germs can do a lot of damage to CF patients. In spite of that I have been reassured that everything has been disinfected and patients with clinical findings do the test at other times than those with not such a clear situation, I am very insecure. How great is the risk to get infected during the test via strong breathing and which consequences could this have respecitvely how can I realize it (first signs)? Many thanks for your help!
27.01.2014
Bronchial congestion
Hello, My 18-months old CF boy has presented a rhinitis last week (this was a loose cough with a clear runny nose). Our physiotherapist said that supplementary sessions of physiotherapy were not necessary because the bronchi were symptom-free. On the other hand the physiotherapist of my friend, who has a CF girl, advices to increase the physiotherapy in case of loose cough. What is the correct attitude? What to do when a bronchial congestion is present? Do we have to contact the CF centre for every rhinitis or cough episode or is a pediatrician sufficient? It’s not so easy to know what to do … Thanks for your response.
20.01.2014
Demineralized water and antibacterial hand gel
Once opened, how long can an antibacterial and antifungal hand gel for the preparation of aerosols for my child with cystic fibrosis be used? Do you recommend some in particular, maybe more effective in relation to the disease? How long is the deionized water useable, once opened for sterilization of aerosol kits? Thank you for your advice
20.01.2014
Cruise on a ship
Hello, We are considering a cruise. We ask ourselves if our daughter with cystic fibrosis may participate in this cruise regarding hygiene, water tanks, swimming pool ... Thank you for your reply. Cordially.
20.01.2014
Cortisone
Hello dear ladies and gentlemen, as the effect of a normal antibiotic i.v. therapy in spite of early great successes unfortunately does not last very long anymore (CRP increases and increases...) and furthermore my kidney values are getting always very bad during an i.v. therapy, I would like to try cortisone for a few months, in order to be able to build up again a few resources. Oral long-term antibiotics (cotrimoxazole, azithromycin, ciprofloxacin, levofloxacin), aztreonam and colistin for inhalation does not really help me anymore, either. As I am with my back to the wall due to my bad kidney values, the question arises if I should not simply try it once with cortisone. What is your opinion on this? Does one take a risk that is too high? My center, unfortunately, does not have any ideas respectively proposals, however just consents to many of my things. Like this we agreed on starting cortisone today with 5 mg. I am looking forward to an answer! Yours sincerely,
20.01.2014
Babies' bronchi often congested
My 14-month-old girl has a failure to thrive, she now weighs 7 to 8 kg for 67 cm, has also chronic diarrhea and constant bronchial congestion, is regularly treated with antibiotics and corticosteroids. Her respiratory therapist thinks for some time she has cystic fibrosis. Her doctor told me that as the screening has been done at birth it cannot be that disease. Is it possible she has CF and screening at birth was negative?
20.01.2014
Mutations
Hello, my child has 3396delC mutation and M1101K mutation. Can you tell me something about these mutations? Thank you in advance.
20.01.2014
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