I think some Doctors would think it were acceptable for a situation like that to occur everyday really.  For there to be a high level of 17 OHP out of the normal ranges at say 8am before the med’s are taken.  That the morning dose being large enough will kill what has accumulated and recitfy that.  In fact I know some Doctors do due to the Doctor here wanting to raise Ashley’s morning dose after results for 17 OHP came back at 95*nmol/L before his med’s were given at 7.30am.  Now to me, that is not what should be done.  They have CLEAR normal ranges for each dose.  It is there all over the web that the ranges are 10-50nmol/L or 500-1000ng/dl.

To me as a parent it matters to get "each" dose exact.   I don’t want him controlled in such a  way that we try to raise the morning dose a little in order to stamp on the high levels that are accumulating at 8am.  I may appear fussy, but to be honest, there is no law anywhere that says I cannot insist that they run him strictly between the right levels where 17 OHP is concerned.  I don’t want my son even making androstenedione before someone decides enough is enough and it is the 3am dose that needs to be raised.  The 17 OHP results are there as a safety net and I want them used, and especially when the results have consistently gotten higher between two one-three monthly blood tests of it.  

I really feel that rasing and dropping any dose in the day is a big deal and the key to controlling these kids better is finding "which" dose is causing the problem before making any changes.  It’s important.  I mean say we had raised the 7am dose as his Doc requested.  That could have meant that every night his 17 OHP levels were being allowed to effectively just climb higher or to those levels, and although androstenedione may be at normal levels, what about dhea’s?  No one was checking for them--we did not know the results YET, they disctincly have an affect on GH and HOW MUCH of the stuff is released.  Too high a level of GH is not encouraging the right rate of growth.  ALSO, those reference ranges for 17 OHP have been published for a good and valid reason on PubMed.  Sometimes we need to pay more attention to these things.  More attention to the finer details.  I therefore switched him immediately to four times a day dosing and raised the 3am dose.  My line of thinking was that if I did that, it would solve the problem because 4 hours would make a difference to that level of 95nmol/L and bring it down to acceptable ranges.  When a result is so high olike that it is obvious that timing is everything where balance is concerned.  

I don’t want to fix something every day after it has already happened when I know where it is happening and I can STOP it from occuring if I work at it.  That is why I took his doses in hand myself and the adjustments this last time.  It is really hard knowing what is happening and letting other’s take the lead---and not quite understanding why they are dealing in the way they do when you feel you would deal quite differently.  Parents need to know this stuff I tell you because these short falls cause growth problems, no matter how small they are.  If I am getting picky now, it is only because I have a right to be picky about what is raised or dropped and where when it could impact on growth in some way. :)