Thanks for checking in Lynn. I actually was planning to post soon.

We just had my son's ped endo appt this morning. (Blood draw was done earlier so the results were in). I can't even believe I am saying this, but yes, he is still showing as oversuppressed. As I am sure everyone is tired of hearing . . . he is on quite a small dose (5mg/day, or 7.8mg/m2/day) yet still shows oversuppressed. His 17 OHP is <5 (range 3-90), ACTH 5.7 (range 12-50), Renin <20 (range 171-1115). His sodium, potassium and bp are all good. His endo also ordered Androstendione done but the lab forgot to run it, so it will be another few days before we get those results.

Clinically, he is not showing signs of oversuppression (or undersuppression for that matter). His growth is good, he grew 1/2 inch and is staying right on the 50% curve for height. He is a little heavy, but that is probably just his body type (I will never admit my weight!). He doesn't have the hump on his lower neck anymore and his "moon face" is really decreased.

His endo would like to wait to see the andro results before deciding if we should reduce again. That sounded like a good plan to me as well. If she recommends reducing again, he would be down to 1.25 mg 3x/day. Ugh, that scares me. This is just so strange.

My husband and I, as well as Jack, are going to have the genetic testing done. If his comes back showing a mild mutation then I will feel much more comfortable. If his comes back anything else, maybe it will give us a direction to look.

As always, if anyone has any ideas on this bizarre case of low dosage - oversuppression, let me know. (Thanks again Carol and Susan for the info on thyroid)

Lynn, how is your family doing? Sounds like you had a great trip to Hawaii. My husband and I went there for our honeymoon and I would love to go back someday. Your son just had a med increase right? How is he doing?