This starts from where my "In the Beginning" post leaves off.
After returning from NIH with no answers I was initially frustrated beyond words. With a little time and encouragement from my friends at cushings-help.com I mailed the disk with Alex's pituitary MRI that was done at NIH to Dr. McCutcheon at MD Anderson Cancer Center in Houston. I also scheduled a January appointment in Los Angeles with endocrinologist Dr. Theodore Friedman.
On New Years Eve, December 31, 2007 I received an email from Dr. McCutcheon. Here is part of his response, "By my reading there is indeed a lesion in the pituitary, largely occupying the right half of the gland..." He went on to explain, in detail, what he saw and the implications. With this piece of the puzzle we were finally getting somewhere! With this Alex's pediatrician was able to refer us to neurosurgeons at both Stanford University and the University of California, San Francisco (UCSF) both in January. Although the radiologist at NIH was unable to see irregularities in the pituitary all 3 neurosurgeon were able to see a problem.
January also took us to Los Angeles for our initial appointment with Dr. Friedman. He told us from the beginning that he was fairly certain Alex had Cushing's disease. He ordered more testing and on Easter of 2008 we received an email from him with an official diagnosis and recommendation for pituitary surgery. Surgery was then scheduled at UCSF with Dr. Sandeep Kunwar.