Hi Chris,

It certainly sounds like life has you on your toes!

Re. Jack’s dose: Offhand, it sounds reasonable to me. Nick takes a total of 0.3 mg/day, which also translates to 0.17 mg/m2/day....same as Jack’s. It is actually the lowest per/m2 dose of dex that he has ever been on. When we started out, he needed higher doses...in fact, I checked my records and it appears that he was on this same total dose (0.3 mg/day), four years ago even though he was quite a bit smaller in size. Over the years, his requirements have gone up and down quite a bit. It is interesting to me how medication requirements can change over time, without any real reason...but that seems to be the way that it happens, huh?

As to what to watch out for: In my opinion, you would watch out for the same things that you would, if Jack was on hydrocortisone or prednisone...changes in weight, growth rate, moods, etc....and adjust accordingly. Nick has also been on hydrocortisone at different points in his treatment...yes, even with Dr. R. I tend to be a bit obsessive-compulsive when it comes to keeping track of his progress and, overall, I think he seems to do about the same regardless of which glucocorticoid he is on...there is the same potential to be well-suppressed, under-suppressed, OR over-suppressed.

One thing that we are doing now that is different than before: Earlier this summer, we got test results back showing that Nick was a bit undersuppressed. Rather than increasing dose, I asked if we could stay on the same dose, just try splitting it in two...with 2/3 given in the am, and 1/3 given at around 3 PM (not 3 am.)....same idea as giving tapering doses of hydrocortisone, a la "circadian rythm" dosing. In fact, we seem to be seeing good results doing things this way....control seems to have improved AND Nick has dropped about five pounds. I think it is too early to come to any real conclusions aobut this, but--for now---I am happy that this seems to open up another possibility for fine-tuning treatment, when there are so few.

I know you have changed mds several times over the years, so I truly hope that this one works out for you. I think one of the hardest things with CAH treatment is finding a doctor that you can trust. Yes, some are definitely much better than others, but it’s not like ONE of them has a secret that no one else knows...they all have the same basic tools and drugs to work with. The trick is finding someone whose opinion you can trust and who has the best interests of your child, at heart. So, I wish you well with this new doctor.

I also hope that Jack does well on the dex. At any rate, it is good to have someone else to bounce idea, experiences, and opinions off of! Please give a holler if you have any other questions.

P. S. You are probably wondering whatever happened to the "project" I mentioned to you last winter. Yes, believe it or not, it is still happening...just taking much longer than I had hoped. Things are finally coming to a close...with luck, I am hoping it will be ready shortly after the new year...I’ll keep you posted.