I was at work when I was told my son had a seizure at school. My response was: “My son doesn’t have seizures.” That was December, 2019, and in that month, he had five Tonic-Clonic seizures. Each time, we took him to the hospital, and left with no definitive answers. Each time, we returned home with a very tired child. Adam was ten.
We laid him out on the living room sofa so he could sleep, and we could keep an eye on him. I remember one seizure at home, we held and watched him while our oldest son, still a teenager, called 911.
It wasn’t until January the next year when Adam was diagnosed with epilepsy and was put on medication. After a sixth seizure, we were finally referred to a Pediatric Epileptologist/Neurologist in London. After another tonic-clonic, more medications were prescribed. Adam then kept having Absence seizures. In March of 2022, the tonic-clonics returned, as well as absence seizures. Finally, in November of that year, he had a Vagus Nerve Stimulant surgery.
Okay. That’s a lot. And that’s only the beginning. To make it clearer . . .
Epilepsy, the 4th most common neurological disorder in the world, is a spectrum disorder that causes many types of recurring seizures and syndromes. A seizure is defined as a sudden surge of electrical activity in the brain that affects a person’s behaviour and appearance.
I mentioned earlier Adam having tonic-clonic seizures. These are characterized by a stiffening of muscles, loss of consciousness, a jerking and bending of appendages, and can last one to three minutes. Afterwards, the person is extremely tired, confused, and sore.
Absence seizures are around ten to twenty seconds of staring blankly, being unaware or unresponsive.
There are documented ‘triggers’ of seizures: lack of sleep, illness, stress, poor nutrition, certain medications, missing medications. In 70% of epilepsy cases, the cause is unknown. Epilepsy can occur at any age.
Adam’s VNS (Vagus Nerve Stimulant) surgery I mentioned earlier, is essentially an implant just under the skin on his chest, with a wire running up to the Vagus nerve. Mild, electrical pulses are sent to the brain via the Vagus nerve, with the hope of preventing or lessening seizures. He got the surgery because he was resistant to the medications he had to take. The implant made no difference.
More and even more testing and monitoring was needed. There were many trips to the Children’s Hospital in London.
As parents, it was difficult to see your child go through all this (Adam was amazing through all of it, without complaint). Stress, for my wife and I, was at an all-time high. My wife slept on the floor in his room, and would wake to every sound Adam made in his sleep (mostly a stretched-out moan). Later, we converted the living room sofa to a bed in case anything happened in the night.
Since the journey began for us, we were in a constant state of helplessness. Information and explanations had to be sought out. We contacted Epilepsy Southwestern Ontario and were quickly meeting with a representative who answered our questions, and gave us invaluable information. This organization, based in St. Thomas and London, has adult and children services that include education, personal support, assistance in making connections with others undergoing similar situations. They can be reached at: (519) 433-4073, [email protected]. 98 Centre Street. St. Thomas, Ontario. N5R 2Z7. There is also epilepsyontario.org.
What we found really special was that this representative we met with, had set up an educational session for educators and support workers at Adam’s grade school (Hanna Memorial). His teachers were given Adam’s emergency meds and taught how to use them, to understand when they were needed.
At one-point, local parents of an epileptic child collected donations and deemed our family worthy to receive them. They, and others, had been through a similar journey, and understood the value of community support.
Family, support, education and empathy are what make life with epilepsy manageable.
In my next column, I will continue with Adam’s journey and address the stigma associated with epilepsy.