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Hi Helen, I think your doctor can get Pulmozyme for your daughter if you insist. My son was born in Sydney and I managed to convince his doctor to get it for him before he was 6 months - he had to get it approved by the Ethics Board so it was a lot of work. I also got my son on inhaled...

Hi Helen, if I were you I'd organize a visit to the Auckland hospital and see if they have better ideas. You could explain you are worried and that you'd like to see if your daughter could get more help if you lived there. In this way you could get their opinion and consider your options. If...

Hi Jon, I can see why you are frustrated. Adult CF is rare, that's why it would probably not help to find another GI specialist in Australia, at least yet. But I'm sure there are doctors who have a good idea of what could be going on, most likely in good clinics in countries where CF life...

Hi Jon, Ventracid will probably help, but your symptoms sound like there a more acute problem - I just reread your post. I recall seeing a thread with a similar question to yours, and the person came back later saying the problems had been caused by the gallbladder, but I can't find that thread...

Hi Jono, I got the Ventracid from here: http://www.eu-versandapotheke.com/search/ventracid.html?row=0. Finding a pharmacy that would ship outside Germany wasn't easy, especially as I don't speak any German (Google Translate came in very handy!). My son hasn't been on any antacids/PPIs - his...

There is a recent study about sinus surgery + bronchoscopy + IV I noticed they've just completed a retrospective study about sinus surgery in CF in Denmark, the study also included bronchoscopy and IVs: http://www.rhinologyjournal.com/Rhinology_issues/Aanaes.pdf The Danish CF center is...

My son does sinus rinses only if he has nasal congestion, which is rarely. Instead he takes all his nebs via a mask and it has worked really well for him (he takes some deep breaths through his nose). For example Pulmozyme works in the sinuses just as well as it does in the lungs. If possible...

Hi jono, there is a German guy with CF who has had similar problems as you are having, and his solution is sodium bicarbonate: ttp://www.cysticus.de/english/fnutrition.htm. I found this site as I was looking at bicarbonate in CF which is interesting. I've ordered the Ventracid from a German...

Tobi and Cayston help against PA in the nose My son takes all his nebs (hypertonic saline, Pulmozyme and Tobi) with a mask and he has had hardly any sinus problems. The Tobi is used as a prophylaxis so he has never cultured PA. However, Tobi does not seem to be effective with Staph in the nose...