Wednesday, January 16, 2013

Monitoring Faith

One of the greatest fears of a parent with a child that has severe epilepsy is SUDEP...Sudden Unexpected Death in EPilepsy.  I know it sounds very morbid but it is a very real fear.  Every night when I go to bed the thought crosses my mind that I could possibly lose him during the night.  Any time he naps longer than usual I start worrying about what I might find if I peek into his bedroom.
For the last few years I have just prayed every night that if Ben needed me that the Lord would help me to know and awaken me.  I have tried to have faith in this...I do have faith in this.  There have been times when I knew He did answer my prayer...times when Ben's seizure was silent and I woke up anyway.  But what about the Lord's will?  How do my faith and His will work into the equation to equal whatever the outcome?
My faith isn't faith if I'm only happy with the answer that I want.  My faith is only faith if I believe that whatever happens is what the Lord knows is best.
I do not however, believe in throwing up my hands and doing nothing in the way of protecting Ben from SUDEP.  I believe I can still have faith in the Lord's will and yet take action to try to prevent the unthinkable.
I don't know if any of that made sense but it does in my mind...kind of :)

At the Dravet Syndrome Conference this summer we heard about a seizure monitor that everyone seemed to love.  We mentioned this monitor once at a Sunday dinner with my family and commented that it was so expensive and didn't think we would buy one.  Not too long afterward, we received an envelope in the mail containing a large sum of money.  My sweet grandma tried to remain anonymous in her donation but her handwriting was too familiar.  Bless her!  We ordered the monitor (and got a smokin' deal on it since I bought it during Epilepsy Awareness Month).  When Andy installed it he adjusted the sensitivity level to the highest possible, tested it by imitating Ben's seizure movement with his hand, and we were satisfied.  My heart felt lighter as we put him to bed the next few nights.  However, one night the alarm went off shortly after we had put him down.  We ran in only to find him sitting up and worried about the loud noise coming from under his bed.  A false alarm. we turned the sensitivity level down.  Two more times over the next couple of days the alarm went off without a seizure.  What kind of movements was Ben making that the monitor was picking up? (we had set it so that it would go off only after 10 seconds of a rhythmic movement)...or was it just faulty?  We were trying to figure out what to do about this and then the other morning I woke up and Ben was seizing...silently.  He was face down in his pillow so I turned his head to the side and waited.  I wanted to see if the alarm went off.  I waited at least ten seconds and then couldn't handle it any more so I pulled him out and went ahead with the routine.  It was a longer one than he's had in a while...6 min.  We gave him Diastat seconds before it stopped.  Why hadn't the alarm gone off?
I have decided that we will give it one more chance.  We're going to move the sensitivity level back up to the highest possible and wait to turn it on until Ben's asleep.  Hopefully, that way, we won't have any more false alarms but will still pick up the next seizure.
If it fails again we will contact the company.

p.s.  Ben is addicted to the iPad.

Sometimes he even feels like he needs both at his disposal.


  1. I can't imagine the daily balance you walk with faith, Aimee. You are always in our prayers.
    I hope you get that monitor to do its job. How long has it been since he has had such a lengthy seizure?
    Love that little ipad addict! : )

  2. Hi, SUDEP is a constant fear but so many people no nothing about it. It's never been mentioned in any of my neuro appointments so I can't imagine it's mentioned in many others either, so sad and frightening :( It really needs to be talked about more!
    Also I was just wondering if your brave little man has an anti-suffocation pillow? Just made me wonder when you said about him being face down.
    My sister LOVES her tablet too! x

  3. Aimee, I think you are striking the right balance in the faith department. Your insights can take many years for people. I like to think that we need faith to move mountains, but don't be surprised if the Lord throws you some tennis shoes and says get walking.

    Now the question is: Is this an item that can be returned / refunded?