Hi Amy - we haven’t spoken for ages and I am sorry to hear about your son.  

There is quite an interesting article in the latest Australian Support Group newsletter written by an adult who came off her medication for a while (8 years in fact, although she wasn’t a salt loser).   She did in the end become very ill and suffered quite badly (tanning due to high ACTH levels, just one of the effects).  Thankfully she went back on medication and realises now the importance of continued treatment.  I think I still have your address - I will get it photocopied and send it to you!