Recently I obtained copies of all my sons blood tests for the past two years as he had become grossly under suppressed.  Analyzing everything, I cannot understand why only 17 OHP bloods have been taken for the whole of the past 18 months here.  Nothing else.  On top of this, at times his doctor (who we have had for years I might add and I used to think he was great! ) told us not to come back for 6 months sometimes.  He is only a Paediatrician and we have a Paediatric Endo fly to our sons hopsital 6 monthly to check things are ok.  His doctor conuslts this man when he has a problem.  When I look back before the 18 month period, tests were done in abundance and what does not make sense is that my son was supposedly well controlled then (though reading back he was grossly over suppresed in my personal opinion.   So I cannot understand why they were done three monthly then and yet when they made a substantial cut of 2.50mg in his daily dose they are slack on the testing and the types of blood tests done normally.  Things like electrolytes and ACTH were done with the 17 OHP tests over 18 months ago but not done in the last 18 months period.  I cannot undertstand the reasoning for the cut back in tests.  As far as I knew up until three months ago, everything was fine and then when we found out that my son's levels had been so grossly out, we decided to obtain copies of everything---even bone age x-rays.  At this stage I educated myself and know more than I have ever known and was therefore able to interpret these things.  Now sitting here, I am feeling pretty angry as it seems that no one gave a damn about what was happening to his electrolytes in all that period or his other levels like ACTH or creatinine etc.---just the 17 OHP. 

I find it hard to believe that he has been where he is now for over two years that only would warrant tests for 17 OHP.  Now I am wondering if tests for the others were done but conveniently lost or we just wern't supplied with copies because they look so bad and that it makes the Doctor look like he has not done his job properly.   I am not wanting to sue someone here, just make sure that this does not happen again and I want to advocate for better quality, basic care for my son that follows International Standards. ( If I could change hospitals and endo's---believe me I would but it is not that simple because to

a.) in changing hospital's  we are talking about a plane flight every three months to the next nearest hospital or a three hour car journey there---which I simply will not do and 

b.) there are no other Paediatricians that deal with this in the hospital where my son is and the Endo is very old and getting on for retirement age.) 

The way people can help me is by telling me the following:

How often their kids are blood tested?

If this has ever been over three monthly, what was the reasoning?

Which tests are commonly done?

Have they ever missed any of the tests out and what do you think where the reasonings behinf that?

If tests were missed, how long before they were done again---or rather what was the gap between it being done last, and then again later---the longest gap = please be honest with me here, because I need to know these things for when I go to my next appointment on 4th October.

Also, if bloods were not in the normal ranges and needed action such as a dose change, how often did they do the blood tests thereafter until they came back within the normal ranges?  I mean did they do them monthly until they were happy with the results?

I realise that many doctors do things differently, but sometimes there are stnadards and protcol to follow with these kids and I believe that my sons treatment the last two years has sadly been lacking looking at things here and as it happens this hospital has just had a major upgrade and a face lift.  I am looking at all the costs for that and the state that my son got into with his hormone levels and trying to piece together what has happened and why and seriously want to do something about it---but I don't want to demand that more tests are done more often, because I don't know what the "norm " is. 

That is where you guys all come in here.  If I could just take up a couple of minutes of your time to answer the above questions, I can correlate the information and it will give me a good idea then that I am on the right track and will give me confidence to be pushy when I insist these things are done in the right way.  You know how it is---they are the doctor and the "expert" and you put your complete confidence in them and don't ever dare question their decisions.  I have lost a great deal of confdence in my childs doctor lately and I need him to sit up and take notice---so I need to quote cold hard facts here.

Thanks for your help in advance,

JH