Monday, November 3, 2014

Epilepsy Awareness Month Day 3: The Decision to Call 911

Robert’s seizures do not scare me.  He has had seizures for as long as I remember having my second little brother.  The only reason he needed to be taken to the hospital due to a seizure was because of what happened during the seizure: falls, concussions, broken jaw, a burned arm, near drowning.

Of course, Robert told everyone he was
I had to pick him up from school a few times when he had a seizure (resulting in a loss of bladder control) and mom was at work. I picked him up and drove him home.

Let me rephrase: Robert’s “normal” seizures do not scare me. 

It’s the out of the ordinary ones who give me a run for my money. 

The seizures that last three or four minutes – watching the clock in case he doesn’t come out of it at the five minute mark.

Those scare me.

A cluster of seizures with falls involved.  He had numerous seizures last February – complete with falls and his legs bent every which way. I thought for sure he was going to break something during that turbulent month.

That scared me.

A cluster of seizures that do not stop.  Robert typically has cluster seizures involving five or six seizures but I am able to give him 1 mg of Ativan between them and they stop. 

Sunday they did not stop.  Twelve seizures before I was even able to safely give him an Ativan. Then several more while I waited for it to do its work.  When the seizures didn’t slow, I gave him another Ativan.

That scared me too. 

Richard and I waited.  I called the on-call neurologist (because, of course, this couldn’t happen during office hours)!  He advised I take Robert to the emergency room. 

I didn’t want to.  I really don’t like taking Robert to the hospital because I know the decline that happens afterwards.  I know what a mess the ER is (great staff but it is a trauma hospital so it is very chaotic).

Here’s my confession of the day:

I really didn’t want to call the paramedics this time because we have a trip to Disneyland planned (for Epilepsy Awareness Day at Disneyland) and our flight leaves on Tuesday.

I am determined to take Robert to Disneyland, gosh darn it! I am willing the Universe to make this happen!  Robert is very excited about the trip (as are Richard and I) and I am not going to let anything stand in the way of going. 

That might sound irresponsible but I know how hospital visits go.  I did not want Robert admitted and didn’t want him to have any sort of decline/

By the time I called the paramedics, I had lost track of the number of seizures but estimated approximately 25 – 30 in a two hour span. 

That’s as many as he has in a month.

So, yes, I called the paramedics. 


Robert had another seizure while the paramedics were at our house and one at the hospital that I witnessed, once I was with him again.

That was at 1:00 p.m.  Robert finally saw a doctor and had blood drawn and a chest x-ray to check for an infection.  Nothing came back and I insisted it was okay to discharge us.  I promised to contact his neurologist the next day. 

Robert was discharged and I put him into the car around 8:00 p.m.

He proceeded to have three seizures on the way home and two once home.  I gave him another Ativan, got him ready for bed and watched him on the video monitor for quite a while. 

The neurologist’s office opens in a couple of hours and I will call them to see what they say about all of this. 

For today’s Epilepsy Awareness Month video, I am posting the video I took of Robert while he was having several of his seizures.  I actually was trying to capture one for the doctors but since he continued to have a cluster of them, there are several on the video.

I know on Day 1 I promised short videos.  This one is long and I haven’t had a chance to edit it.  Skip through anything that doesn’t interest you. 

(And, yes, I will post video of us in Disneyland – because WE ARE GOING!)


Leslie said...

Oh, Trish.

I have two reactions: my heart bleeds for Robert, you, Richard, and everyone else affected by seizures.

I am also angry. I have complex partial seizures, and can't go to the ER anymore because they insist I am not having seizures, I am having psychotic episodes. The paramedics believe me...the doctors and nurses don't. They won't look at my medic alert bracelet, they won't talk to my neurologist, they just call in a psychiatrist.

So I take ativan and wait. Or I call my neurologist, who has to admit me for appropriate care.

Hang in there Trish, Richard, and Robert. You ARE going to Disneyland!!

Trish Hughes Kreis said...


This makes my blood boil! I realize ER docs have to be specialists in just about everything but I have found a real blind spot when it comes to epilepsy. I got so mad at the ER doctor last July because I had told them for HOURS to call neurology and they didn't!

We are lucky to have great neurologists and paramedics. Now to work on the ER docs!