To Julia S

The twice a day regimen is ok for babies and it is a good thing for parents too at a time when it is hard to get them to swallow the meds with the bitter taste.  However, kids metabolize the hydrocortisone differently as they get older.  I have no idea why---maybe it is the fact that their demands change as they stop having so many naps and expend more energy at pre school nursery or school.  Anyway, if the three times a day dosing is working, but she is over suppressed, then maybe they need to look at cutting back on the over all daily dose a little rather than the times that she is being dosed. My son was on twice a day until he was 5 years old and then they changed this to three times daily.  They may do this as opposed to raising the over all dose by splitting into three possibly as it means that they are metabolizing the 12 hourly doses to fast at some stage as they grow and need to give it 8 hourly to help with that problem.  I would sooner this than raising the dose a great deal anyway.  My son is now more recently changed to 5mg 7.30 am ---3mg 3.30pm---and 7mg 11.30pm.  They have not raised the overall dose from 15mg---they have just spread it out I guess to see how he goes before raising it and assuming that it is not enough for him.  Over a year ago they dropped his dose from =  5mg morning---5.00mg afternoon---and 5mg daytime TO 5mg morning---2.50mg afternoon---and then 5mg 10.00pm.  The combination of such a cut on top ot the fact that he had to go 12 hours before the morning dose was enough to over the course of several months make his 17 OHP results extremely high---infact five times more than the actual normal ranges.  They then raised his dose back to 15mg---which at that point was a little like trying to sneak up on a speeding bullet!  A month later the 17 OHP was even worse!!!  So they had to stomp big time for a month with a dex dose that was one thrid more than his normal HCT dose to make the adrenals regress.  Then they have put him back on 15mg per day.  I would have preferred to do the stomping when they increased the dose back to 15mg with three days of double dosing like Laura K says they do, as the dex was a little harsh for him and he had severe side effects when his 17 OHP levels came back within the normal ranges.  However, his Doctor didnt' think to stomp that way and now he knows about stomping.  But if you note, he has maintained the same dose and just juggled with the amounts and times it was over a year ago--even though my son did some considerable growing whilst on the 12.50mg daily dose.  I am happy with that for now and hopefully we can now just go up in small increments with the syrup than what we would have done with split pills if he escapes again. 

I guess all endo's do things differently but they could learn such a lot from each other---maybe they need a CAH Endo Message Board?!?!?

JH