Hi Aboveallislove and Gammaw, here is a as short as possible summary about our CF travels, I hope you'll find some of it useful!
In the early days I also had lots of questions about my son's treatment, but I found I could not get convincing answers to most of them from his clinic. The team was just going to wait for trouble and then react, the only treatment they offered was physiotherapy (which we ended up never doing). So I looked for information on the web and luckily managed to get into contact with Jeff Wine (the director of the Stanford CF lab). Another important discovery was that the Copenhagen CF Center were trialling Pulmozyme with their youngest patients, so they clearly were very proactive. The more I found out about them, the more convinced I was that they were treating CF the way I felt it should be done. We went to visit them when my son was 6 months old, and we've been back several times.
For a while we also went along with the system at my son's clinic: a bronchoscopy which left my son wheezing for days, an infant lung function test under sedation during which he picked up MRSA. The MRSA was not even picked up at the clinic, but luckily we visited Copenhagen soon after, and returned home with a bag full of oral antibiotics - it was pretty dramatic. After this I decided that we had to do things differently and stay away from the hospital as much as possible (they did not even have an infection control policy those days). Luckily the senior doctor at the clinic agreed that we'd only see him when we needed to. He was happy to write the script for the inhaled tobramycin (we used the IV tobramycin in a nebulizer) and managed to get approval for Pulmozyme, even though it was a lot of work for him.
This system worked really well, and if there was a problem like staph, I'd go to the doctor asking if my son could get it treated 'the Danish way'. He was always surprised at the high doses of oral antibiotics they use. (I think the doctors have discovered the easiest way to get rid of me is to go along with what I ask for because I won't back down.)
A few years ago we moved and there have been some 'adjustment' problems with the doctors, but the system is working essentially the same way.
We've been able to maintain this independence because my son has never been ill and has never cultured PA. The key to this is the daily inhaled antibiotic recommended by Jeff Wine (he gave a plenary about this approach in the 2008 North American CF Conference, there is a video of it on the Conference web site). I've later found out there is also a CF center in Brussels where they have used the same PA prevention protocol with very good results:
http://www.ncbi.nlm.nih.gov/pubmed/16790367.
There was also a larger study of PA prophylaxis using cycled Tobi (28 days on, 28 days off) the results of which were disappointing, but not surprising because the rationale of the continuous prophylaxis is to compensate for the immunodeficiency in CF sputum, so it makes no sense to do it only every second month (like brushing your teeth morning and night every second month). One option would be to cycle Tobi/Cayston or colistin monthly, but I've read any clinical trials are unlikely (I don't know why).
So this has been our experience. We visited my son's old clinic some months back, and his doctor's first comment was that "none of our other patients look as good as him". My son also had his first ever CT scan done there and the doctor said "this is remarkable, his lungs are absolutely clear, I have not seen this before with an 11-year-old CF patient!".
