To drive three hours, have an hour appointment and then drive back again as well as stopping at some point to eat, this would be totally impractical.  I have two school age children that I need to be here for at a certain time---otherwise they too would have to take a whole day off school when my son needs blood tests in addtion to Jared.  This is why it is not an option for us on top of the fact that it would cost too much.  This is even though I drive a diesel 7 seater pajero (shogun-four wheel drive)---it would cost me over $60 to drive to the next nearest hospital and even then this is not doing my son any favors if he should ever have an adrenal crisis and have to be rushed to the nearest hospital anyway and have no one then familiar with his health care.  I appreciate your sentiments though about the importance of finding a good endo, but I don't think in our situation that changing doctors is too good an idea.  ( I often think of the saying better the devil you know than the devil you don't)  I have had dealings with one in one hospital going North and going South it isn't much better.  I would however consider an appointment with a private endo in a private hospital if they do not look at improving the standard of care at the one where my son goes to at the moment but that is sort of a last ditch plan that I have in mind and even this will cost me---though initially that one off cost would probably turn up some proof that I am not mad here.  There are two other children with CAH being treated by this same doctor and their care has been fine---I have been in touch with their parents.  That is why I am so baffled and wondering why me or my child here? 

I can fully understand that sometimes kids slip through the cracks where health care is concerned but I was having an argument with this guy the other week about the frequency of blood tests and how two in twelve months ( and I mean one at one end of twelve months and another at the other end here!) he just didn't seem to want to say they had stuffed up.  That I could live with.  What I cannot live with is them not apologizing or ensuring verbally that it will not happen again or doing anything about it now to improve his care so that we do not go there again. 

I therefore feel that I need to have others input here so that when I deal with this next time, I have cold hard facts about the standards in care Internationally and also I just wanted to know if anyone else had these problems.  That is what we are all here for.  To compare notes and help eachother out and give us confidence to advocate for better healthcare and consistent health care for our kids at the end of the day.  I don't like to be perceived as an hysterical parent---which is what I feel is happening here---when the plain facts are that there has been some serious stuff ups the last 18 months with my sons health.  One type of blood test only performed twice in the last twelve months is absolutely shocking and needs to be addressed.  Especially when these guys made such a drastic cut in meds.  I just cannot get my head around what has happened.  Before I knew a lot about CAH and finding this message board, I guess I would have left things and been too ignorant to argue with them.  I probably would have accepted their excuses about non-compliance or him being so hard to control!  Because I found it and know a lot more now, I am really quite angry that people were praying on my total ignorance as a parent and the sheer rarity of my childs condition.  This in itself has sparked anger in me I thought that I would never feel towards a doctor treating him.  I could live with it if he just turned around and said "Sorry, we overlooked Jared for a while there and it won't happen again," but he hasn't done that.  They are sweeping my letters and comments under the carpet.  So I as a parent am no better off as now I am left wondering if they even know what the Standard for care is with children who have CAH or what precocious puberty is or what is over or under suppressed for that matter.  Total learning curve I can tell you.  I hate to sound so pessimistic on this mb but if you could all just put here the answers to my questions, that in itself to me would help because knowing I am right would be half the battle won when I go to see this "doctor" in October.  I know I won't leave his office then until I am feeling ok with his answers. Just don't want to be made out to be some complete and utter fussy parent is all.  Thanks for the responses so far and I look forward to you all  putting repleis down here.  It would be very much appreciated.  I know you all post here regularly, but it matters to me what other's children are receiving in the way of healthcare in comparison to my child.  I know that I could go and read one of these web pages where it recommends the three monthy blood tests and which ones must be done but that is all they are---recommendations.  Not specifying the way things have got to be.  That is where this Doctor and other's are getting let off the hook here, because by all accounts doctors can do as little in the way of testing or as much as they see fit and when something goes wrong because  there are no strict standards laid out "by law" Internationally, they can make up excuses or ignore your complaints.  Why?  Because someone forgot to make sure that these things are a legal requirement.  I for one would like to see this stop.

JH