Hi Julie,

Generally if the 17 OHP is so high, the Endo should have been in touch to raise the med’s for your child, unless he/she has not got the rsults as yet.  have you heard from the Doctor?   Ashley’s were considerably higher than your child’s at 15’000 (426*nmol/L) and they had to really hit it with a more potent steroid to bring it back within normal ranges and so they switched to dex temporarily and verbally estimated to me over the phone that that would take 4 weeks on a dose that was equivalent to 20mg Hydrocortisone per day.   That was essentially a just over a third more than his prior dose of Hydrocortisone which was 12.5 mg per day at the time.  When he went back to Hydrocortisone, his dose was then naturally raised to 15mg per day and he has had no problems since.   Sometimes they grow out of a dose (that is possible and happens regularly) and if there has been some considerable space between labs and clinical assessments they are just exposed to those periods a little longer. 

I’d recommend that you look at going no more than 3 monthly if you have ever gone longer than that.   (We were going 6 months so that is the only reason that I mention that here).  After 4 weeks, even after having that level of imbalance that Ashley had, his 17 OHP numbers were back within the normal ranges (47*nmol/L) as they had predicted which was a good thing.  Using dex meant that not only was he on just over one third more per day for that four weeks, he was also in a sense was getting the stress dosed in the mornings to help cover what I felt where activities and have some excess to work at chipping at the 17 OHP numbers until they came back down.  It would be very easy to miss a dose of HCT which may be critical when a child is so out of the ranges and can ill afford to miss them, whereas if this is forgotten when they are well and in good ranges, it is not so big a deal.  It is easily caught up on by giving the next dose and the missed dose together.  however, when your stress dosing with HCT and miss, I don’t think if you forget the dose it is p[ractical to "double" the already "increeased"  dose.   So dosing once per day with dex for that short time does the job of bringing theie levels back in range and Endo’s do not consider that it will affect their growth being on it for such a short  period. 

Looking at your childs levels, they are out of the normal ranges, and continuing to head that way, so I am sure that the Doctor will just want to look at raising the doses a tad.  It is only when they are really way out of whack that they resort to dex as far as I am aware.  Ashley has had levels similar to your childs in the past and they just raised his HCT dose.