Ok, so I think I mentioned on the board a week or so ago that my 8 year old SWCAH child was having trouble with his labs and his endo ordered an MRI of the brian with contrast.  Apparently, his 17OHP was better, but his ACTH was still elevated, so the endo wanted to take a look at the brain and the pituitary gland with an MRI.

Well, the results are in and apparently my son has what is called a Rathke Cleft Cyst in the brain.  The docs are saying we need to see a neurosurgeon next week to consult the MRI results.  Since we do not have any former MRI’s with which to compare this one, they are not able to tell if this was a congenital anomaly or if it developed over the years.  It sounds like it is directly related to the pituitary once way or another, but I was wondering if anyone has had any experiecne with this.  From what I have read, it may require surgery and may have a high rate of re-currence.  But the endo is telling me it is not much to worry about and is not similar to a tumor in that it is not classified as benign nor malignant.  Any help is greatly appreciated.

 

Nicole