My Experience

I hate seizures.

Don’t worry this picture of Nick was not taken recently.  It is from a few years ago. However, lately I have been reading posts and queries from parents of newly diagnosed children with epilepsy. My heart breaks for those families over and over.  As I read their stories, I can remember all the swirling emotions of my own.  When Nick was diagnosed with epilepsy, I desperately wanted to find something.  I wanted to believe that there was a cure, or a particular new drug therapy or a treatment that would make the seizures go away for good.  I had hope.  For some kids and their families, that does happen.  For others, like Nick and our family, that is not our story.

Even now, with 37 years of experience, every time the seizures start, I am a little bit surprised.  Whether it has been a week or a few months, or longer, since the last episode, I always hope that we have finally found it.

So in those first moments of helplessness watching my son in the midst of his seizures, the swirling emotions return.  I want to rail at the heavens, and I want to be humble and accept Gods will.  I want to be strong for Nick and for those who are witnessing it and I want to run away and hide.  I am afraid that they won’t stop and I have faith that they will.

With my thoughts running around in my mind, Arden and I step into the dance that we know so well.  We time the seizures, we chart the data, we talk to the doctor, we administer the rescue medicines in the prescribed pattern.  Over and over, for hours and then sometimes, when we have followed the entire protocol and the seizures haven’t stopped, we call the aid car.  The paramedics come, and the ambulance takes us to the hospital where they battle for us to stop the seizures.

So far, every time, they have stopped.  We are told that someday they might not.  That frightens me too.  I have watched some of the videos posted by these new parents, asking others if what is shown is a seizure pattern.  They express that they are new at this.  They say that they don’t know yet what to look for.  How can I tell them that will never change, you will always wonder.

It is hard to explain, but everyday I wonder if today is going to be a seizure day.  Out of habit, I react to every odd movement, sound or response, questioning if it is the start of a seizure pattern.  If Nick falls down, I don’t ask him first if he is ok.  I ask him if that was a seizure.  If he says no, then I ask if he is ok.  If he says yes, we start the dance again.

Arden told me that he thought I needed to share some of the difficult things and not only the uplifting things about taking care of Nick.  I am interested in hearing your comments, just be gentle.  I feel vulnerable and a little raw.

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3 thoughts on “I hate seizures.

  1. Eva,
    I appreciate that you are sharing your experiences with others. I guess I have a unique perspective. I had a child with seizures. She was very small. It was scary too. Eventually she grew out of them. At the time we didn’t know if she would. I’m now also married to my sweet husband who is a neurologist. I’ve worked with him in his office quite a bit. I find that the biggest help is better education for the public on what to do when they see someone having a seizure. Often people over react out of fear or misinformation. Although you may know just what is needed for Nick, I’m sure that the worry for the reaction of people around you causes a lot of angst. Having to deal with others who are reacting and not helping is something that you don’t need at a time when you and Arden begin your dance with helping Nick. I’ve seen that with patients it makes it worse to have others, well intentioned, but wrong. For some people the stress of this makes their seizures worse. Learning from my husband and his calm demeanor in those times really helped me. I know now what to do, what to watch for, what to keep note of. I still hate seizures too, but like most things in life the fear loses it’s power with greater knowledge. Until that time comes when medicine solves this complex problem, people will still be having seizures, sometimes at the most inopportune moment. If there were more public education on some basics, it would greatly help those who have to battle this horrible disease. You guys are the experts now, having lived it.

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    1. Thanks Shelli, we have had a few strange and sometimes hurtful responses from others but typically people have been compassionate and wanted to help. You are right about the need to educate others about correct protocols for assisting someone who is seizing.

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  2. My younger sister had seizures when she was a child. They came from some brain damage that occurred when she was a baby. They were rare, but always grand-Mal, and they terrified me. My sister once fell out of the top bunk to the floor. She wasn’t allowed to sleep on the top after that. They gave her medication and and eventually she grew out of them. I remember looking at her contorted body and being a mix of confused and numb. Was this even real? As a child I didn’t understand it. My mother on the other hand was a wreck. She did understand it, though she didn’t show the calmness or preparation that I have always seen you and Arden show. She didn’t have nearly the experience that you do. As a bystander I would like to know what I CAN do to help someone in that situation. What I have done in the past is just stand there waiting to be asked to do something. I hope that is the right thing.
    Hugs to you all for everything you do and go through. You are not alone.

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