This is exactly what happened to Ashley.  Sometimes his bloods were taken off at any time of the day.  Nothing was  as I interpret it should have been now after learning about the bloods and when they should be done ideally.  He was too over treated.  Ten grossly under treated.  Not good.  

When I did gel and ask the Doctor about was for 24 hour urine but he said, " That is ancient practice and is no longer done!"  Oh but when he was in hospital for two weeks at diagnosis, it was practically the best way of surmising what his doses should be?!?  Also, other Doctors were still doing that when I asked.  I.e. Gary Warne in Aussie.

Not only this but it seemed that it was also ok for 6 monthly monitoring which was what basically threw Ashley into big trouble because he was left for a 7 month period and exposed for far longer than he needed to be!  That and the quantity of blood tests over time decreased in number until tthe Doctor concerned was only taking 17 OHP even  when his levels were completely unbalanced? 

I cringe at the number of parents there must be out there that do not have an online connection and do not know all this stuff so really they essentially have no confidence to ask about what is happening and do not know of support groups like this.  It is a travesty given that half of what happens is irreversible and completely unnecessary in this day and age for these kids.

I had toyed with the idea of writing our story and forwarding it to other parents in NZ who have don’t appear to give an email or online contact on the list, but haven’t got around to it as yet.  I need to contact them anyway regarding all the other issues I have been working through.  I think we should all do this from time to time if we are in a support group that does have contacts who don’t have online connections.  I’ll have to make time to do that soon though as I’ll be studying hard from January onwards as  am doing a Bachelor of Science in IS and T ...so guess it will be before christmas!