HI!

It’s good to hear from you. I love this board. Unfortunately, I haven’t been able to visit as much lately. This year is beyond busy - new school for Jack, new daycare for the baby, catching up at work after my maternity leave, building a new house, new church, etc etc. I have lost the ability to keep up with my own life. Luckily it should all slow down when we move in Dec. 

RE: the dex. I have been meaning to email you Carol and ask your opinion. We switched endos this summer and the new doc mentioned he would like to get Jack on dex. I decided we should give it a try because 1) so far I have been really happy with the endo and trust his opinion, 2) I know you Carol have been very happy with dex, 3) it seems the new research shows good results with dex as long as it is used in the appropriately small doses, 4) with school, playdates and sleepovers it was getting tough to get all Cortef doses in him, and last but not least 5) I am crashing and burning and 4am meds aren’t helping.

Since Jack was on a relatively low dose of Cortef (8.75mg/day or 7.7mg/m2/day) his endo started him on .2mg of dex (2ml of a .5mg/5ml elixer)(or .17mg/m2/day)

We’ll re-check his levels in 6 weeks.

Carol, does this seem reasonable to you? Anything you would recommend I watch for when switching.

Valerie,  I don’t know if this is the right move or not. My reasoning is above. We’ll see if I regret this in a year. We were having great luck with the circadian dosing - it is just such a tough lifestyle. I am also hoping the dex, given that it is a slower release, longer acting drug may even out some of the extreme mood highs and lows we have seen. Jack seems to metabolize Cortef quickly. I could always tell when a dose "wore off" about 5-6 hours after he took it.

I would love to keep "talking" about this. Feel free to email me, or we could start another post.