Could this be a pituitary tumor side effect?
Questions in the Pediatric Endocrinology forum are answered by Dr. Deanna L Aftab Guy, affiliated with Vanderbilt Children's Hospital. Topics covered include adrenal problems, diabetes insipidus, menstrual irregularities, obesity, parathyroid abnormalities, pituitary abnormalities, puberty concerns, rapid growth, rickets and bone disease, short stature, and thyroid.

You need to find a neurosurgeon that specializes in pituitary issues. We found ours through the Pituitary Network Association http://www.pituitary.org/. You'll find all kinds of good information here. We seen Dr. Krisht at UAMC & he advised us to wait until our son finished growing to do any operations because it could mess up the pituitary gland.
My heart is with you cause I know how hard it is to finally find a doctor that knows what their talking about & it's scary because there really isn't any information about kids having this. Good luck & let me know how it turns out!