Hi Andrea,

I am quite surprised that they put so much responsibility on children to make decisions which they are not capable of making.
They need to realise that children of that age, despite appearing to be quite mature girls do not have the brain maturity that enables them to make properly informed decisions or to decipher all the options being put to them. For girls about 16-18 is the age when this part of the frontal lobe can cope and for boys it is often not before 19.
I don't know if the very best outcome could not be had if they were totally being dealt with properly trained paediatric Pain Team members who truly understand the implications of one being so young having to cope with a disease that even adults struggle so much with.
Take care
Tayla