I mentioned a few weeks back that my oldest CAH child had to have an MRI because his growth has been way out of whack for a while.  Anywhoo, his 17OHp was better controlled, but his ACTH was still high according to the docs-they ordered the MRI to look at the pituitary gland and check for any "spots" near it that can sometimes develop when growth is out of control..........

The redsults came back and they found what they thought was a Rathke’s Cleft Cyst in his brain.  Apparently, this is common and basically a congenital anomaly.  Usually they are not symptomatic, but in some cases can cause headaches, blurred vision and could need to be surgically removed.

The neurosurgeon we were sent to see is not quite sure at this point what it is.  On the one hand, it could be this particular type of cyst, totally unrelated to the CAH.  But then I was told that it could be a result of the out of control growth and in fact RELATED to the CAH, and something that we might expect to see "disappear" once his growth was better controlled.  The only way to know for sure would be to do a biopsy, and he thought that totally unneccessary at this point.  We are going to have a repeat MRI in three months to check on it.

Anyone else have experience with this?  Does anyone know how it is that these "spots" can appear in the brain when growth is not well controlled?  It would be interesting if any of you had any experience with this, as it is all new to us and a bit scary.