A must watch for any CF paediatric parent.
Different doctors give different advice. So do different clinics. There’s no getting around it. We do not have an agreement on modes and models of care from one country to the next or even one clinic to the next.
As parents we can’t avoid the responsibility of making the most informed decisions possible, which is why we all need to seek out information and experiences beyond our own as much as we can. The real reason is not just hearing other doctors speak but also listening to other parents and children with CF. These are the people on the battlegrounds at the forefront of day-to-day care of this disease, just as we are. The CFRI is a terrific organisation that offers loads of resources and they recently had a paediatric conference on “Tools to help your CF child thrive” – this is the first presentation from that series. I’m going to post them one by one with a short summary over the next few weeks.
So here’s a summary of the first session :
What are the things we need to do to keep CF lungs healthy: Tips from a CF researcher who is also the parent of a CF child Continue reading “Keeping CF lungs infection free”