Purple Day: Our Experience with Epilepsy

Purple Day is on March 26th, and it’s a day dedicated to raising awareness about epilepsy, a neurological condition that affects around 65 million people worldwide — including my 13-year-old son, Brody.

Epilepsy is more complex than most people realise

Brody was diagnosed with epilepsy when he was 4 years old, but if I’m being honest, he probably had it from birth — we just didn’t know.

At first, I didn’t really understand epilepsy. Like many people, I thought seizures were like the ones you see in TV shows — someone falling to the ground and shaking uncontrollably. But epilepsy is so much more complex than that.

There are different kinds of seizures, and they can show up in ways you might not expect. Some are silent, with no visible movement at all. Others might sound like someone is crying or laughing. There are many kinds, and until you or someone close to you experiences it, you may not realise how varied they can be.

Brody’s first seizure

I still remember the first time Brody had a seizure. He was one year old, lying on the kitchen floor. One side of his body went stiff — his arm and leg froze, and I didn’t know what to think. So, I took him to our GP. By the time we were seen, Brody was back to his usual self, and we were sent home with no real concerns. It wasn’t until a few months later when Brody had a more obvious seizure that I realised what had happened that day.

The day Brody was admitted to the hospital with seizures is etched in my memory forever. Earlier that day, we had been rocking him to sleep in his buggy, and I noticed his arm twitching a bit. It didn’t last long, so I thought maybe it was just a trapped nerve. But later, when he was in his highchair, it happened again, so we decided to take him to the hospital just to be safe.

Of course, by the time we got there, he seemed completely fine. But on the way back home, it started happening again. This time, my gut told me something was wrong, so we turned the car around and took him back to the hospital. They agreed to admit him for monitoring.

A short while later, while Brody was lying in the hospital cot, he suddenly started laughing — and then, his whole body started convulsing. Staff rushed in, and it was one of the most terrifying moments of our lives. We felt so helpless.

It took nearly a year before Brody had another seizure. That year, I spent most nights sleeping on his floor, terrified and calling for ambulances every time he had one. It wasn’t until he was finally diagnosed and put on sodium valproate that things started to improve. Thankfully, the medication made a huge difference.

New challenges

Now that Brody is going through puberty, we’re facing new challenges. After a long period of his epilepsy being under control, his seizures are starting to come back, and they’re changing again.

Most of his seizures now happen at night, and he screams during them — and it’s just heartbreaking.

Every family’s experience with epilepsy is unique, and I feel grateful that, up until now, Brody’s epilepsy has been relatively well-managed compared to some of the children I know. But it’s still terrifying. As a parent, there’s always the worry about SUDEP (sudden unexpected death in epilepsy), or the fear that Brody might stop breathing or won’t come out of a seizure.

We do everything we can to be prepared: we have an epilepsy alarm, carry emergency medication with us at all times, use a video monitor, and even have an epilepsy pillow. But the truth is, you can never fully prepare because epilepsy is unpredictable. It changes all the time.

You are not alone

To any parents out there who have just received an epilepsy diagnosis for their child or suspect that their child is having seizures, I want to say that you’re not alone. There are amazing resources out there, like the Daisy Garland charity, which can help you get an epilepsy monitor, and the Epilepsy Society, which offers tons of helpful information.

One piece of advice I’d give is to video your child’s seizures. It might feel awkward and unnatural, but it can be so valuable for a neurologist or paediatrician in understanding your child’s epilepsy better.

Trust me, when your child is having a seizure, it’s hard to remember all the details afterward. Also, connect with other parents — there are lots of online groups where you can share experiences and find comfort. You’ll learn so much from those who are walking the same path.