Hi Chris,

I am so sorry!! As you know, Nick has always done very well on dex, so I am very sorry to hear of the problems you are having. At the same time, I think it is a really good idea to listen to your child....if Jack is complaining this hard, I would bet he really doesn’t feel that well and something is off with his meds.

A few thoughts:

The times when Nick has complained VERY VOCALLy about not feeling well, he really was either GROSSLY undermedicated or GROSSLY overmedicated. The first time was when his medication was accidentally HALVED, as a result of switching from dex to hydrocortisone. Then, we had the exact opposite experience as you....he was doing just fine on the dex and when we switched to the hydro, he became a complete basket case.

The second time was when he was on dex and we eliminated a second medication that was interfering with how the dex worked. When we got rid of this other medication, we knew we would also have to reduce the dex dose....we just didn’t know by how much. In a nutshell, what we found out was that, without the interfering effects of this other medication, he really only needed about HALF as much dex as what he was getting at the time. In other words, he was on almost TWICE as much dex as he really needed.

The interesting thing is that, whether it was severe undersuppression or severe oversuppression, his complaints were similar. He became very moody and withdrawn, and he complained very frequently and very loudly about headaches. With him, at least, I knew he was actually hurting and not trying to be overdramatic. Once I even tape recorded his crying/screaming jags so I could prove that I was not making the stuff up.

Anyway, to get back to Jack:

I went back to your post of a couple of weeks ago to see what kind of dex vs hydro dose Jack is on. You had said Jack was put on a dex dose of 0.17 mg/m2, which I ageed was a relatively low dose....the same per-meter squared dose that Nick is on currently. What I didn’t do last time was to compare Jack to Jack...i.e. his new dex dose to his old hc dose, to see how the two measured up.

In fact, if you used a roughly 80:1 dex:hc equivalency, which should be about right for treatment of CAH, it does show that Jack MAY be getting much more dex than he really needs. 0.17 mg/m2/day IS a relatively low dose as far as dex goes, however, given that Jack needs a REALLY low per meter-squared dose of hydro, it is certainly possible, if not probable, that his dex requirements might also be MUCH lower than average.

Trying to equate doses mathematically isn’t always the best way to do this, but---in fact---if you do work through the math, using an 80:1 conversion factor, the 8.75 mg/day of hydro that Jack was getting is really more like 0.1 mg of dex, not 0.2 mg.

You might also be interested to know that, from Dr. Rivkees’ article, though AVERAGE dex doses were in the 0.20 mg/m2/day neighborhood, some patients DID require much, much lower doses...as little as 0.04 mg/m2/day in one ( ~1/4 of what Jack is getting currently.)

At any rate....perhaps something to consider and discuss with your doctor, if you want to try to stick it out. At the same time, with all that you have going on in your life, I can certainly understand wanting to go back to what seemed to work before!

Please let me know how you make out and if any of this is unclear...I am sort of typing in a rush!