What Lies Beneath

The school year has begun for Cesare.  Medicaid, bless their souls, continues to fund one to one nursing for Cesare.  I advertised on Craigslist and very quickly found not one but two wonderful nurses.  I explained to both that their role would be to medically supervise Ces at home and when accompanying him to college to help him organize himself and stay focused.  Cesare has enrolled in just one class: Biology.  He is finishing his first week of school today.  Megan accompanies him to school and reports that in class he is engaged, with his hand in the air.  It takes a  team of two conducting a small summit each morning, however, to help him to organize his belongings before heading out the door.


It stops me in my tracks, at times, to consider the possibility that underneath the pervasive effects of Cesare's many drugs, could conceivably be an alert and highly functioning individual waiting patiently to get out.
If you are not yet acquainted, allow me to introduce you to Cesare's battalion of drugs:

• Onfi (clobazam): "Onfi causes drowsiness and sedation. Onfi may slow thinking and impair motor skills."

• Felbatol (felbamate): "Felbamate should be used with extreme caution, because it carries a significant risk of liver and bone marrow failure, which can be fatal."

• Fycompa (perampanel): "Side effects include dizziness, sleepiness, fatigue, irritability, nausea, weight gain, and problems maintaining balance. Serious psychiatric and behavioral reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported. Patients should be monitored for such reactions, as well as changes in mood, behaviors."

If you are the parent of a child with epilepsy, or any other drug responsive disorder or disease you will understand when I say these horrible drugs are our friends.  They have, after multiple brain surgeries and alternative therapies, given him a semblance of a life.  How he functions at all under the weight of those side effects is mind boggling.  

As the fall marches on, we will delve deeper into the possibility of the RNS implant.  If he is a candidate he wants to proceed.  We've stepped many times before into the land of 'could this be the one?'.  I'm not ready to go there quite yet.  But the specter of full time college, a career, independence...wow.  That young man is in there, I just know it.  However, we'll happily take him any way we can get him.