World Epilepsy Day

Debra Reynolds
I am a rural girl running barefoot. My interests are writing, reading, nature, autism & epilepsy.
Health

Mar 27,2018

Yesterday was World Epilepsy Day. It passed almost without my notice. When I realized that, the gratitude and relief which flooded over me made me weak. 

My only son is 25 years old, and has suffered from a seizure disorder nearly his entire life. He had his first recognized seizure at age five, but videos from before that show what we now know to be myoclonic seizures. Doctors consider it likely that his seizure disorder began at the same time as his descent into regressive autism, and they probably share the same cause.

I knew nothing of epilepsy. It was something that a few people had, and there were medicines which fixed it. How wrong I was. 

Twenty years ago, the incidence of epilepsy world-wide was considered to be 1:100 people. Frighteningly, that has recently changed, and the current incidence among young children is now about 1:26, a four-fold increase. 

One of the words I swiftly learned in our journey was idiopathic, which means ‘of unknown cause’. Although people have had seizures since history began, in most cases we still have no idea why they happen. We also have no idea why the incidence is rising so abruptly. 

One in three people with a seizure disorder are classified as intractable, meaning ‘very difficult to control.’ My son was one of the unfortunate ones. I soon learned that if you fail two medications, the likelihood of any others working to control the seizures is very low. 

We tried drug after drug, alone and in combination. We tried supplements and therapies, but mostly we tried to survive. He had several different types of seizures, some of which appeared to be caused by the drugs we used to prevent them. And there were other side effects. 

After a generalized tonic-clonic (also known as grand-mal) seizure one night, he woke the next morning with weakness all along one side of his body, and his face drooped. He didn’t understand why he couldn’t run and play, and he dragged that foot as he tried. I was terrified. I had to wait for his neurologist’s office to open, and then was told in a bored voice, “Oh, that’s just Todd’s Paralysis. That’s common with Depakote [his seizure med] and it’ll go away in a day or two.” 

They had never warned me. I didn’t know whether to be relieved or angry. Mostly, I just tried to get through the day. Life with a profoundly autistic child who could have multiple seizures per day, who couldn’t seem to understand the most basic rules, and who slept two hours most nights, made it hard to think or plan anything. 

At the most difficult point in his journey, our boy had “breakthrough” seizures and I learned another term. Status epilepticus is a state when the body seizes for prolonged periods of time. He was prone to non-convulsive status, meaning that he didn’t fully convulse but had a series of seizures as frequent as every few seconds. A status episode could last for hours. All we could do is give him emergency meds, chart the seizure frequency and duration, sit by his bed, and report to his doctor periodically. 

It’s astounding the things your mind can get used to. My brain went numb. I went through the motions while my husband cared for our other children, and family and friends prayed. I knew two women who had lost their children to complications of severe seizure disorders. I kept that terror locked in a tiny box in the back of my mind. And I kept trying new things. 

In his late teens, we tried an amino acid used as a drug for epilepsy. In combination with his other drug, it pushed his seizure frequency to only 6-7 per week. We were ecstatic. 

Four years ago, we began chiropractics. It’s a gentle and effective treatment, which helps him in many ways. Gradually his seizure frequency has dropped to only 2-3 very small seizures PER YEAR! Gratitude fills my heart. In the back of my mind, the box of fear is becoming a little dusty. And this year, I almost forgot World Epilepsy Day. 

Photo by David Cassolato from Pexels https://www.pexels.com/photo/person-holding-string-lights-photo-818563/

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