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What I Want People to Know About Childhood Epilepsy

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November is National Epilepsy Awareness Month! Like cerebral palsy, epilepsy is an umbrella term for lots of seizure disorders. Epilepsy can be caused by brain trauma, although this is not always the case.

When I was diagnosed with epilepsy, I was 4. After diagnosing me, the doctor said it was quite common for children with cerebral palsy to develop epilepsy.

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When I had my first epileptic seizure, we were on a family holiday with the caravan in Yorkshire, in the middle of nowhere. It took the ambulance 40 minutes to get to us, 40 minutes to the nearest hospital, and I was seizing the whole time. I started to come out of the seizure when we arrived at the hospital.

Usually, I had simple parcel (minor) seizures, which only lasted a couple of minutes. I was conscious throughout these. I could hear everything, but I could only really look; I couldn’t talk until I was coming out of the seizure. Most of the time, I knew when I was going to have a seizure because I felt dizzy, my jaw would start to tremble, and a few seconds after that, I would lose my speech. I could only get someone’s attention by staring or making some sort of noise, because I couldn’t talk.

I only had about three grand mal (major) seizures. I had to go to hospital when I had these. When I had a grand mal seizure, I would lose consciousness and I don’t think I knew that I was having a seizure until I regained consciousness.

I was on anti-convulsive medication, which helped to prevent seizures. We gradually increased the dosage until I was having the maximum amount I could have due to my weight. But I kept having seizures, so the doctor put me on another medication, which stopped the seizures.

I can’t remember when, but I had an EEG (electroencephalogram); this is a test that detects electrical activity in your brain using small, flat metal discs (electrodes) attached to your scalp. Your brain cells communicate via electrical impulses and are active all the time, even when you’re asleep. This activity shows up as wavy lines on an EEG recording.

The EEG showed that the type of epilepsy I had was the type most children grow out of, which I did. The only way to see if I had grown out of it was to take me off the medication. We thought it would be a straightforward process, but it wasn’t. We were told that if I had a seizure, my electric wheelchair would be confiscated. We argued with the “professionals” about this, as they’d reached the conclusion that if a person had an “unexplained” seizure, they would take their vehicle (which they claimed included electric wheelchairs).

I have been seizure free since 2005. Thank you for reading, and I hope this helped you learn more about epilepsy.

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Thinkstock photo by Sohel Parvez Haque.

Originally published: November 5, 2017
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