Epilepsy and Us.
- Lucy
- Jan 13
- 5 min read
Updated: Jan 15
What it looks like before you have a diagnosis, and why trusting your instincts matters.
Before we had words for it
We finally met with Penelope’s neurologist last week. Our pre-Christmas appointment had been cancelled due to sickness and rescheduled for January. Even the snow tried to stop us attending, but we insisted on a face-to-face appointment. It felt important — not just clinically, but personally — to meet the doctor who would be responsible for our daughter’s care.
From a parenting point of view, I sit in a slightly unusual position. I was diagnosed with epilepsy as a child. Mine was treatable and I eventually became medication and seizure free. Penelope’s epilepsy is not.
That knowledge helps in some ways, but it does not prepare you for what it feels like when the person having seizures is your child.
At this appointment, we were finally given clarity. When asked what the “end goal” was, the answer was simple and devastating: to reduce Penelope’s seizures to around two or three a week. This was the first time we had been told what we were realistically aiming for — and what Penny may live with for the rest of her life.
The signs we didn’t yet understand
Looking back now, we can see that Penelope was having seizures long before anyone labelled them as epilepsy — long before we even knew what we were looking at.
When she was still very young, we would put her in the shopping trolley like any other baby. She would look up at the ceiling lights or fans, but something about it never felt right. Instead of just watching, she would strain upwards, tilt her head right back, and lock into that position as if the muscles in her neck were stuck.
She would stare into space, completely unresponsive, and then suddenly snap back as if nothing had happened.
At the time, we didn’t have the language for what we were seeing. We just knew it wasn’t normal.
As parents, you are constantly told not to worry. That children develop differently. That you’re overthinking. But our intuition was telling us something else.
The seizure that changed everything
When Penelope was just over one year old, I was at home with her while Ashley had taken our other daughter swimming.
Penny began having a seizure in my arms — what we now believe was her first tonic-clonic seizure. She stopped breathing. I started CPR while calling 999. Time distorted. I don’t know how long it lasted, only that it felt endless.
Our house is difficult to find. I could hear the ambulance nearby but knew they hadn’t reached us. I ran down the drive holding Penny to meet them, desperate not to lose any more time.
The relief when I saw the paramedics was overwhelming — but short-lived. I could see the concern on their faces. No one, no matter how experienced, wants to see a baby who isn’t breathing.
They took over her care and continued treatment. Penny began breathing again, but her vitals were not good. I rode with her to Good Hope Hospital under blue lights. Ashley joined us later after leaving our other child with a family friend.
At the hospital, we were told Penny had likely had a febrile seizure due to illness. We were discharged and sent home.
Looking back now, it was clear this was a tonic-clonic seizure.
Diagnosis didn’t come quickly
Penelope was diagnosed with cerebral palsy and epilepsy at around 18 months old. An MRI showed a porencephalic cyst on the left side of her brain — a fluid-filled cavity where brain tissue should be. In simple terms, Penny is missing part of her brain.
An EEG confirmed epilepsy.
But even after diagnosis, understanding her seizures took time.
She mostly experiences absence and focal seizures, with occasional tonic-clonic seizures.
During absence seizures, Penny will suddenly stare into space and won’t respond to her name or movement. She snaps out of it with no awareness that anything has happened.
Her focal seizures vary. Sometimes she is aware, and you can see fear in her face as she realises what is happening. Other times she is not aware at all. Her body becomes stiff and rigid, her pupils dilate, her tongue often pushes out to the left. If she is speaking, her words slur and fade away.
After seizures, her cerebral palsy worsens temporarily. She becomes weak down her right side, struggles to walk, drools, and her speech is affected. At times it looks like she has had a stroke.
Tonic-clonic seizures are the most frightening. Her body locks, spasms take over, and everything stops. All seizures are frightening, but these are by far the hardest.
Medication, fatigue, and difficult choices
Penelope is currently on two anti-seizure medications: Brivaracetam and Oxcarbazepine. She was previously on Keppra, but higher doses caused severe behavioural changes, including aggression.
More recently, her Brivaracetam dose was reduced from 3.5ml twice daily to 3ml twice daily due to behavioural side effects. These decisions are never straightforward. Every change is a balance between seizure control and quality of life.
Her epilepsy is currently uncontrolled. We have been told that best-case scenario, Penny will always have seizures due to the damage to her brain.
Fatigue plays a huge role. Since starting school full time, her seizures have increased. More stimulation, more exhaustion, more seizures. It is a cycle that is incredibly hard on such a small person. When we spoke with the neurologist he explained it was all about balance. Balancing the side-effects, and balancing the need for medication and the desire to give Penny as ‘normal’ life as possible. If the medication doesn’t work, surgery will be our next option and that in itself is frightening. But I trust we are in good hands and we have to make those difficult choices to give Penny the best shot she has.
Why we built My Penelope
One of the main reasons the My Penelope app exists is because of Penny’s seizures and meltdowns.
When everything feels chaotic, being able to log what you are seeing — times, types, frequency, what happened before and after — gives you something solid. It gives you evidence when words fail.
The seizure tracker is the tool we use most. It has helped us communicate clearly with Penny’s neurology team, especially when decisions need to be made between appointments.
For parents reading this
If you believe your child may be having seizures, trust yourself.
Seizures do not always look dramatic. They can look like staring. Like stiffness. Like odd movements that are brushed off as quirks. You are not imagining it.
Record what you see. Write it down. Time it if you can. Show it to your doctor. Keep pushing if you are dismissed.
We know how hard it is to be heard. We’ve lived it.
There are charities doing incredible work, including Young Epilepsy and Epilepsy Action, who offer support, information, and advocacy.
Epilepsy is now part of our life. It always will be. And we will walk every step of it with Penelope.
If you’re worried your child may be having seizures.
If anything in this blog feels familiar, trust your instincts. Many parents recognise seizures long before a diagnosis is made, and it can be incredibly hard to be heard.
There are charities in the UK doing vital work to support families affected by epilepsy. They offer trusted information, helplines, advocacy support and resources for parents who feel lost or overwhelmed.
Young Epilepsy
Young Epilepsy Supports children and young people living with epilepsy, offering guidance on diagnosis, education, safety and family support.
Epilepsy Action
Epilepsy Action Provides practical advice, emotional support and clear information for people affected by epilepsy, including parents at the very beginning of their journey.
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