Hi Andrew, this is something that is a pretty common worry for parents once they start to get a handle on coping with CAH on a daily basis.  With that instinctive comfort zone a holistic framework comes into focus out of the fog.

From visiting this board from time to time it seems clear to me that most endos remain in the fog because they seem to be more interested in on dimensional clinical results.  This is even more worrying because research shows that the first two years of a CAH childs growth and development determines the end point in terms of growth potential.  On one level their conservitism and fear of having a child who is difficult to control and the inherint risks is more than understandable.  However, if my memory is correct 80% of kids do not fall into the difficult to control group.

Your endo is happy with the details he is looking at but by not asking you the correct questions regarding eating habits, moods, sleeping patterns etc your son is not on his optimal treatment regime.

I have said this before that if endo's work on an mg/m2 range of 14-20mg/m2 why not find the optimal mg/m2 for the individual.  My son's mg/m2 at 4.5 was 22.5 and it has been falling to 16 as of Dec.  At 4.5 his height was in the 85+% and in Dec it was on the 46%.  All these figures I have got myself and it is clear as mud that something was off here.  But his figures look great, lets not rock the boat prevails.  His dosage was dropped 25%(20mg-15mg) to a mg/m2 figure of 12.5.  I was expecting some problems with this size of dosage drop but Liam has been doing well and I have notice no negative implications to date.

Getting endo's out of the comfort zone is not easy but as our knowledge base and understanding of the big picture improves it is easier to get endo's taking us seriously.  Getting over the ego thing can be difficult and as I have said on various occasions.  Whenever you can find a female doctor/endo because they are much better at listening and seem to be more interested.  Maybe a horrible generalisation but it is backed up by experiencing the health care systems of many countries.

As usual  I tend to waffle on but the key thing is if your instincts tell you something is not right, they are normally right. TC

ShaunP.