After Kierstin was born with Tuberous Sclerosis we started  meeting other families who had children with TS.  We had always heard other TS families talk about SEGA tumors. Other parents would talk about the SEGA (subependymal giant cell astrocytoma) usually in the context that they were thankful that their child did not have one.  Well Kierstin has two of them.  A SEGA is a Neuroepithelial tumor which grows on the ventricles in the brain.  The main worry about these tumors is that they are deep in the ventricles.  They are large tumors and they have the tendencey to cause hydrocephalus or "fluid on the brain."   The brain and spinal cord are surrounded by a clear fluid called cerebrospinal fluid (CSF). This fluid is produced and stored in cavities in the brain called the ventricles. It circulates around the brain, moving from ventricle to ventricle.   Hydrocephalus  is a condition in which there is too much CSF in the ventricles.

     We were saddened to learn from Kierstin's last MRI that her SEGA's continue to grow. Even though they consider these tumors to be "slow growing" it is no comfort to us to know that sooner rather than later we will once again be faced with making decisions regarding brain surgery for our sweet girl.  There is the option of the immunosuppressant medication called Rapamycin; however then we will be worrying about compromising her immune system as well.  Dr. Ess wants to wait a few months for another MRI to see if the SEGAS continue to grow.  So until then, please keep our little princess in your thoughts and prayers.

Love, Amy & Neil