May 13, 2009
Today we saw two fantastic endocrinologists in Atlanta, thanks to a very good friend of my family. (I don't want to name names in case any one would get in trouble for sneaking Bertrand in. But, you know who you are, and THANK YOU!!!)
We learned a lot about the human endocrine system. Some insights on ACTH in particular included: how ACTH is produced, how quickly it degrades (fast!), how its relationship with cortisol works, and how this all relates to Bertrand.
According to the doctors, explanations for his prior elevated ACTH levels include, at the top of the list, that the ACTH draws aren't accurate for a variety of reasons (Bertrand's stress level, time of day, amount of time until processing, etc.). A distant second is a possible tumor.
They redrew his cortisol and ACTH and took careful note of the time and Bertrand's emotional state. If these results are also elevated, we'll proceed with ACTH stimulation testing at Utah. We will know the results of the draw within the next two weeks, in time for B's June 1st appt.
The experts we met with today reiterated that Bertrand is in the realm of the rare.
I can't help but think that we are also in the realm of the rare--to have such supportive friends and family. Our fantastic friend got Bertrand this appointment with a world expert endocrinologist. Matthew's dynamic Aunt Shirley chauffeured and cheer-led us through the appointment. And, my sweet Titi Lili took us out to a scrumptious dinner (Dante's Down the Hatch!) afterward. Not to forget, Matthew's brother, Booj, serving as DJ and comedic relief. :) We are a very lucky family, indeed.