Times of day that the blood tests are done and whether your paediatrician is factoring these in with his calucaltions.  In other words if you go and have a blood tests after morning meds or before them and he isn't factoring this into the whole equasion it could lead to him assuming he is well controlled or undersuprressed/oversuppresssed.  Does he ask you when the blood tests where done at your appointments.  If he does not I'd take this as a sign he couldn't be doing that with his calculations and especially if the bloods arn't drawn before your appointments and on a different day.  Also all children with CAH are different and "maximum" for bmp m2 does not always apply.  That is just a way for doctors to calaculate a rough dose and then they need to do frequent monthly blood tests after that to check that the dose alteration was satisfactory.  This is because the level of impairment in the adrenal glands dictates the level of severity your sons suffers CAH.  For example the average dose for kids would be between 10 - 25mg per day per m2, and that needs to be determined.  Over all I would say that it is a combination of many things mentioned here that is causing a problem.  Your doctor would need to know all this though.  Is he an paed endo or just an endo.  I know that my sons Paed knows naff all in terms of CAH and he just consults a Paed Endo when he get's stuck---hence our problems last year.  Also like Janet says---your son may need three times a day dosing now as his metabolism will be different.  He may excrete hydrocortisone 6 - 8 hourly and also see section above about missed doses.  We all make this mistake from time to time but I am thinking more and more that this is what has caused my sons problem.  Doctors call it "Non-Compliance" sometimes, but I guess it is something that should be looked at as any deficits in the blood caused by a missed dose could contribute to a higher level of androgen in the blood over a long period which would cause growth to accelerate.  The first sign that I knew my son had escaped and that his growth had accelrated was a strong reeking adult BO.  He complained about this and asked if he could use my MUM anti perspirant one day.  His doctor didn't think this was a big deal but his 6 monthly specialist did and said it was something that needed dealing with.  If you can pick it up then, I feel that you may just be onto something as after that thing can escalate pdq! 

 

JH