Epilepsy: What it’s like when your son has unpredictable seizures

Tracey with her son, Hamish, who was diagnosed with epilepsy in 2008. Source: Supplied

When her son was diagnosed with epilepsy, fear and anger consumed Tracey. Twelve years on she reveals how the family copes with his seizures, which can’t be stopped.

Tracey Macmillan is a mother-of-two, a business owner, and is on the steering committee for the national fundraising campaign for epilepsy research. She reveals the journey her, and her family, have been on since her son, Hamish, was diagnosed with epilepsy.

It was 2008 and as I drove home from parent teacher interviews at my son’s school, I felt my anxiety rise. I knew there was something wrong with Hamish. Just a couple of hours earlier we had been sitting with his English teacher when he was asked a question and didn’t respond. He just sat there in silence while his face slightly contorted. It was over in about 20 seconds, but when he spoke, he seemed spaced out. He was 13 at the time and had just completed his first term at boarding school. I thought maybe it was stress, or perhaps he had forgotten to eat properly that day, or maybe he was dehydrated. But on that drive back home my nursing instincts kicked in and I was convinced he’d actually had a seizure.

My husband and I booked him in to see a neurologist and two weeks later Hamish was undergoing brain scans and various tests. The neurologist told me I was being alarmist, that my former job as a critical care nurse had made me conjure up a worst-case scenario. Then my worst fears came true, the test results revealed he had epilepsy.

Tracey says the whole family has been impacted by Hamish's epilepsy.

I felt immense grief, anger, and sadness. I spiralled into a dark place and his diagnosis became all-consuming for me. I questioned why this had happened to Hamish. My nursing background also meant I knew what drugs were used to treat epilepsy and I knew how they could potentially dull a person’s personality. I was fearful for what life would look like for him.

It was revealed that what Hamish had experienced in that parent teacher interview was known as an absence seizure. These cause a short period of ‘blanking out’ or staring into space. Like other kinds of seizures, they are caused by brief abnormal electrical activity in a person’s brain. An absence seizure is a generalized onset seizure, which means it begins in both sides of the brain at the same time.

After his diagnosis Hamish began to have these seizures more regularly. Some days he could have hundreds a day, other days less, and they could last anywhere between five to 20 seconds.

Eventually I managed to crawl out of the dark hole that I had found myself in and I threw myself into making sure my son would live as normal a life as possible. I got in touch with the The Epilepsy Foundation and, with their help, I spoke to Hamish’s school and advocated strongly for him to continue to be able to play sports. This was a huge part of his life and I didn’t want that taken away from him. It took time, and education was needed, but thankfully his school adapted to the challenges.

While there was always a level of danger with his previous seizures, it had now gotten so much greater and the possibility of serious injury was suddenly very real.

I also threw myself into researching his condition and fundraising for research. But as I was doing all of this, Hamish went the other way and wanted to talk about his condition as little as possible. He just wanted to get on with life. Every time he had a seizure, he became angry that it had happened again. I remember nights where we were eating dinner at home, we’d all watch as Hamish had one of his seizures at the table, but when he ‘came to’ none of us wanted to say anything, knowing how upset and angry he would be. It was like the elephant in the room that we couldn’t discuss.

His condition also affected his sister, who was the first point of contact when something went wrong at school. As well as that responsibility, she also had to deal with the majority of her parents' attention being focused on her brother - a difficult pill to swallow at that time.

A new normal

Later that same year Hamish’s condition worsened, and he began to have tonic/clonic seizures. These are the seizures most people associate with epilepsy and involve a person losing consciousness and falling to the floor. Then the convulsions of the limbs begin, and these can last anywhere between one to five minutes - any longer and it becomes a medical emergency. Hamish had just got back from a ski trip with his school when it happened. I remember getting the call and feeling that dreaded fear rise again. What if he’d had a seizure while on the chairlift? What if he’d had a seizure while skiing and he’d hit something? My mind started to race with the worst-case scenarios. While there was always a level of danger with his previous seizures, it had now gotten so much greater and the possibility of serious injury was suddenly very real.

Despite the different drugs he is taking, Hamish continues to have seizures.

That fear stayed with me. Each time Hamish came home to stay I was on high alert. Every noise I heard caused me to go running into his room to check he was OK – not something a teenage boy really appreciates their mum doing! Call it a mother’s instinct, but I began to see signs in Hamish which indicated to me he was close to having a seizure. When I got that feeling I’d lie awake all night, worrying that something would happen to him while he was sleeping and that he’d stop breathing.

Unfortunately for Hamish, the three different drugs he’s taking to treat his epilepsy won’t ever stop his seizures. Most people are under the belief that if you get epilepsy you can take drugs to stop the seizures and you can continue to live your life as normal. But about 30 per cent of people have the type of epilepsy Hamish does, meaning there is no known cause for the condition, and it affects their whole brain, rather than one side. For Hamish, and people like him, they must live with the seizures for the rest of their lives.

But fast forward a few years and today, Hamish is a happy 25-year-old who works as a digital media specialist in a large company. He is in a loving relationship and has grown up to be a truly caring, empathetic man. His seizures are still unpredictable, he can go months without one, and then he can be in the pub with mates when one occurs. But he has learnt to live with his condition, and he is surrounded by amazing friends and family who always watch out for him.

My hope is that one day research can find a cure, or effective drugs, for these types of seizures. The more we talk about it the more we’ll be able to remove the shame and stigma that seizure sufferers often face. The more it’s discussed also means more awareness and more funding for research. In the meantime, as a mother, I will continue to do all I can to help my son and others like him.

Hamish gave permission for this article to go ahead. Along with the rest of his family he also works tirelessly to raise awareness and funds for epilepsy research.

Source Insight