Cushing's Info

I am the dad of a 14 year old boy who is diagnosed with Cushings.

A pituitary adenoma was removed via a transnoidal operation @Childrens Hospital of Boston, and we are now in the wait & see period to determine if they got it all, allowing his cortisol levels to stabilize to a normal level.    Beyond that, it's anyone's guess what the future holds in store.

We have learned how rare children with Cushings is, especially with boys.  He demonstrated none of the classic symptoms often described here.  It was lack of growth development during his advanced state of puberty that raised our concerns.  We sought out an experienced endocrinologist (with the invaluable assistance of our pediatrician) who, at first, did not spot it or test for it, but eventually put us on the right track.

His blood tests sugested nothing radically wrong, and it was only because we pushed the endo for growth hormone that an MRI was ordered.  It was the MRI that confirmed the tumor on the pituitary.     it took various consultatations before we found the  most experienced surgical team.

Websites such as this are a blessing, but you owe it to yourselves to find the surgeon & endo team that has performed as many of these as possible before.  It is a difficult, often convuluted process, as reading over the experiences to be found here can attest.