Living With Epilepsy (It Sucks, But We've Got This)

Of everything we share on this blog, epilepsy is the hardest to write about — and the most important. People don't often talk about how serious epilepsy can be, because it's scary. But it's part of our journey, so here it is honestly.

My epilepsy

My seizures are mostly nocturnal — they happen while I sleep. They're also what's called status seizures, which in simple terms means they don't stop on their own; they need special rescue medication. That combination makes me high risk for SUDEP (Sudden Unexpected Death in Epilepsy), which nobody mentions until it applies to you.

That's why, even though I'm not a baby any more, I wear a special monitor every single time I sleep and have a motion camera in my bedroom. These devices have genuinely saved my life several times. They come on holiday with us too. I also sleep on an anti-suffocation pillow, supplied super fast by the amazing charity HOPE for Epilepsy 💜.

What it takes to manage

• Strict routines. We have firm rules about bedtime because tiredness is one of my biggest triggers. We've been known to bend them a tiny bit for fireworks night 🧨 — some things are worth it.
• Medication, constantly adjusted. As I grow, my doses need reviewing, which means accurate weights. Fun fact: I wiggle too much for standing scales, and most GPs don't have seated chair scales — we've driven 48-mile round trips just to get weighed. We think every GP surgery should have one.
• Trained parents. Some of my medications are controlled drugs, so Mummy and Daddy are trained to administer them and monitor me afterwards. They've also had resuscitation training. They are my full-time healthcare assistants as well as my parents (and my admin staff 😂).
• A packed hospital bag that lives on the landing. Mummy fell over it once and it reminded us our family isn't quite like everybody else's. We're regular emergency visitors, so we stay ready.
• Specialist reviews. We see a tertiary epilepsy consultant and have discussed everything from ketogenic diets to brain surgery. For now, medication and lifestyle changes are keeping things as steady as they can be.

The triggers

Illness, tiredness, excitement, heat, growth spurts and hormones. Which is to say: being an 8-year-old boy is basically one big trigger 🙈. The festive season is notorious — excitement, late nights and winter bugs all at once.

The scariest stretch was when flu got through my vaccine and gave me febrile seizures on top of everything, an ambulance ride (well, two), a hospital stay and then pneumonia as a follow-up punch. Mummy and Daddy will forever be grateful to the paramedics who filled their bedroom that night — all eight of them.

The streaks

We count the days between seizures, and we celebrate the streaks: 166 days… 271 days at our best 🎉. Then a seizure comes, the counter resets, and it sucks every single time. But here's the thing about me — the morning after a seizure that's the equivalent of running a marathon, I've been known to insist on going to school anyway because it was World Book Day and I'd planned my outfit for weeks. I don't let epilepsy decide who I am.

If you take one thing from this post

If you ever see someone you don't know having a seizure, call an ambulance. A seizure lasting more than 5 minutes can have serious consequences. And if you're a parent newly facing an epilepsy diagnosis: ask your specialist the scary questions, including about SUDEP and night-time monitoring. The knowledge is frightening, but it's also what keeps us safe 💜