Monday, January 27, 2014

PNES - Psychogenic non-epileptic seizures (PNES)

Psychogenic non-epileptic seizures (PNES)
In one word?  Scary.  Your thriving, growing child explains that she "goes" to a place where she can't remember spaces of time throughout her school day.  Immediately, my thoughts go to seizures and Epilepsy. 
We travel this path thinking it's Epilepsy.  What will the neuro say?  What will they do?  Weeks later, we still have minimal answers and are going through tests.  The initial EEG shows nothing.  Why is she having the seizures.  By this time, I have seen the seizure first hand and it's worst than I thought.  She has was seems to be Absence Seizures.  She's there but not.  And she only has them at school.  Strange, right?
As if the first EEG is not bad enough, they order a second one to capture approximately 36 hours worth of data and possibly one of the seizures.  My poor child has to wear the wires attached to her head to school, since that is were most of the episodes occur.  Being in 7th grade is challenging enough.  Now, she has to go to school, where the students are beginning to ask questions about why she has these "things", wearing wires and a monitor!  As a mom, I know it has to be done.  As a girl that was bullied in the 6th grade herself, it's not happening!  My brave daughter with tears in her eyes says, "I'll do it mom but I want to wear a hat.  Like a winter hat."  I coordinate with the school to get permission for her to wear a stocking hat, like you wear when it's cold outside.  I braided her hair around the wires and monitor and wrapped it up in gauze.  We pulled the cap on and covered everything we could and off she went.  Most of the girls at school were amazingly cool about it.  Many even complimented her on the hat.  Day one - done!  Day two, we choose a different hat.  One with fur that pulled down over her ears - like an old hunter's style hat.  The guys really liked this hat.  A few even mentioned they wished they could have all worn hats to draw attention away from her.  We thought that was so sweet of them.  We had accomplished our goal.  We captured the data plus a few seizures.
Waiting.  Waiting on results from a test seems to take forever.  Finally, they called.  Still nothing.  We went in to see the neurologist.  She explained what my daughter was experiencing was PNES - Psychogenic non epileptic seizures.  The link below gives all the scientific explanations.  Here is our explanation.  We learned from a neuro-psychologist that PNES are just the way certain people react to stress and anxiety.  Some people deal with it great while other may have panic attacks or yell or scream.  Stress affects everyone in a different way.  My daughter's body learned to "have a seizure-like event" when overloaded with stress and anxiety.  But when asked about stress at school, my daughter said, " there is not much."  
What we were able to learn, with the help of the psychologist is that my daughter didn't really understand what stress and/or anxiety were much less to understand if she was experiencing it.  Our first obstacle - to help her understand stress and anxiety.