Hi Val,

 

Had to look back through some of my saved files to trace Ash's past doses.  From what you told me, it looks like Ash was at 12.5 mg of HC, when he returned some pretty high lab numbers.  You then put him on 0.25 mg. of dex; dropped down to an intermediate dose of 0.20 mg; then ended up at 0.18 mg.  When you switched him back to HC, I believe it was at a dose of 15 mg.  From what I remember, all of this also happened within a relatively short period of time, though I don't recall the exact amount of time he was on each of the different doses. 

 

You also had given me numbers for Ash's height and weight, which put his body surface area at 0.971 m2.  At his starting dose of 12.5 mg HC, this would have put his relative HC at 12.5/0.971= 12.87 mg/m2/day.

Using an 80:1 dex to HC conversion rate, this meant that the first dex dose of 0.25 mg would have been equal to 0.25 x 80 = 20 mg. of HC.  At a BSA of 0.971 m2, this would have translated to 0.25 / 0.971 = 0.257 mg/m2 of dex or 20 / 0.971 = 20.597 mg/m2 HC.

 

If you think that Ash was oversuppressed on as a result of being on the dex, at the time, you're probably right!  Given these numbers, it sounds like 0.25 mg. was probably too high of a dose for him. According to our doctor, 0.22 mg/m2 is a good starting point for dosing with dex.  This would have meant that Ashley probably should have started out closer to a dose of 0.21 mg of dex, what you ended up dropping him down to.  Though, it doesn't seem like a big difference---because of the strength of dex---a difference of 5-10% can make the difference between under- and over-suppression. 

 

If you compare the size of this dex dose to its equivalent HC amount, you can also see that it represented a big jump---from 12.5 all the way to 20 mg.  Or, expressed in relative terms, 12.87 mg/m2/day compared to 20.597 mg/m2/day.  Any way you look at it, it seems like that initial dose was too big.

 

The problem is, I think it takes a while to lose physical symptoms of oversuppression.  So, even though you eventually dropped his dex dose down to 0.18 mg, it's likely that not enough time had gone by for the effects of what happened on the larger dose to go away completely.  If he had stayed at the lower dex dose for a while, I am sure you would eventually have seen his signs of oversuppression go away. (Well, I guess you did, eventually, when he was put back on a HC dose of 15 mg, which would have been close to that 0.18 mg.  dex dose.)

 

All of these dose changes and equivalencies are making my head spin a bit!  I guess this is where I'd like to interject a little caveat, here.  Even though I realize that you are having a lot of problems with responsiveness from your MD's and that you are impatient to get everything under control, sometimes it might pay to take things just a bit more slowly.  Remember that you have to factor in lag time, everytime you make a change.  The only problem with making a lot of changes very quickly is that it makes it a bit more difficult to see exactly what is causing what to happen.  So, I would urge you, if you could, to try to slooooowww down a bit.  I think it's great that you are doing all this research and thinking about different dosing regimens, etc., but I would also urge you to discuss your plans and concerns with your doctors prior to putting any new plans into action. 

 

Okay, enough proselytizing....where was I?

 

It's interesting that you've noticed a big change in Ashley, just as a result of moving his doses around.  Didn't you think he was undersuppressed on this same dose, just a short while ago?   If so, you're right that this is actually good news!  Since the goal of glucocorticoid therapy is to achieve adrenal suppression with the smallest dose possible, it's interesting to note that you can keep the same absolute dose, but go from undersuppression to oversuppression, just by changing the timing of the meds.  Less side effects to worry about, doing things this way!

 

Anyway, I probably haven't completely addressed all your questions, but will have to come back to this a little bit later.  Sorry it took a little while to get back to you.  It was a three day weekend here and I can never get anything done when the house is full.  Finally, today, I have my space back.  Aaahhhhhhhhh!