I would have to agree with your Carol in most of what you have said.  What baffles me is, if parent's like us can figure these things out for ourselves, why the majority of doctors can't do this either?  To me your concepts and obviously your doctors concepts are just logical and have been proven when all is said and done.  My child is on three times a day dosing and we do this day in day out, but if there is a better much less hassle free way of going around this, why is it that no one is looking at this?  I would gladly go along with a longer acting medication after learning from you more recently about such and investigating this for myself by researching.  The only way that such new concepts could ever be accepted is if some of us do accept them theoretically and go with them I guess.  Quiz these people and ask them why this is.  I guess a lot of them would say that growth is compromised, but have they really looked into these matters and tried them to be able to make judgement?  I will certainly be asking about this at my next appointment with our endo.  I guess it doesn't really matter what type of CAH your child has (in answer to Sandra's question) as doses would be catered to  the individual childs needs just like hydrocortisone is at present.   I don't recall who asked about getting an estimate from a bone scan about a childs final height.  I don't imagine that that would be possible as every child will go through periods of under and over suppression and unless these are kept strictly to the percentile line of normal growth *(which is basically impossible with CAH due to periods of under and oversuppression which are inevitable) either these two will affect the final height potential.  *They generally aim for somewhere between the Mother and Father's height as a target and note those down on your childs growth chart and try to follow that curve as closely as possible.*  That is basically a good indicator that things are progressing well besides bone scans and blood tests.  Another way that you could possibly move through all this (that's if you were willing to try the longer acting treatment) without exposing the child to too many blood tests on top of what they already need to have, is analyzing urine samples over 24 hours.  I would certainly be willing to go along with something like this if I knew that it would help in the long run with dosing medication.  I have in the past forgotten doses and missed doses (and most parent's that I know have done this too )and even though my doctor has assured me that this does no harm, I have often pondered about the effect it has not just short term but long term.  Surely one dose that carries you through to the next day, and ensures that your child has no gaps where he/she is exposed to the negative effects of androgen is sensible?  As both my husband and I are small stature as it is, I feel that it is important to get this right and hope that this is looked into more closely.  Thanks for your idea's Carol.

 

JH