Thanks for your responses. Lisa, I’ll see what his endo says about 2x a day.

Carol, oversuppression is my hunch too. Especially since we have had such problems with it in the past and he was on such a low hydrocortisone dose.

Jenni and Jane, my understanding of dex is that years ago they did not recommend dex for the reasons you stated Jane. However, recent research shows that is works well, even on children, when given in the correct doses. In the past it was prescribed at way too high of a dose and resulted in growth issues. Carol is the clear expert here (so feel free to add in Carol)

So why did we switch to Dex when Cortef was going fine? That question will haunt me. I debated it for months.

The reason to stay on Cortef was obvious - it finally seemed to be working well.

The reasons to switch: Jack seems to metabolize Cortef very quickly. After much trial and error, we discovered he really only did well on a very small dose spread 3-4 times a day and given according to circadian rythmn dosing. While I will gladly do anything for my child, I have to admit after nearly 2 years of getting up at 4:00 am (and still trying to go to work, function normally, and birth and raise his now 1 1/2 year old brother) I was very tempted by the thought of sleeping until 6:00am.

Also, his dose was so low (8.75mg/day) it was challenging to split the pills accurately. And, as he has gotten older it has become more difficult to make sure he gets 4 doses a day on time every day. He had missed a couple of noon doses at school, and it was hard for me to ask his good friend’s mom (and my good friend) to get up at 4:00 am when he went on sleepovers.

I also anticipated more difficulties ahead as his social circle expanded and he was more and more out of my control 24/7.  And finally, his endo really wanted to make the switch and get him settled before he starts puberty.  A possible side bonus we had hoped for was less moodiness without the up and down metabolizing with 4 doses of Cortef.

Again, thanks for your thoughts. I am calling the endo tomorrow to ask for a blood draw asap. Carol, do you think it matters if blood is drawn before or after the am dex? The lab opens at 8:30 and I hate to withhold dex until after the draw, however, I don’t want to skew the results. With the Cortef, he was drawn with the 4:00 am dose in his system.

Thanks again,

 Chris