The Fear of SUDEP

Almost a year ago to the day, out of nowhere, my teenage autistic son had a seizure, his first in over five years since he had major brain surgery.

There was no warning, he didn’t appear to be ill, but it lasted almost three terrifying minutes and marked the return of epilepsy to our lives.

In the months that followed he had more seizures both at home, at school and even in public. He visited the doctor numerous times and he was referred to hospital to see a neurologist, one of his first appointments in the adult hospital as opposed to the children’s he’d previously attended.

We’d been on this journey before when he was just a young 11 year old but now as a strapping, tall and manly 17 year old things were so different.

Now with frequent longer seizures, many on waking or during the night, some causing injuries, I was sat down and given some very stark facts.

My only son, my longed for child, was at very high risk of SUDEP (sudden unexpected death in epilepsy).

I sat there in silence trying to take that fact in.

I left with a leaflet, a prescription for medication to try, and a determination to keep my child alive whatever it took.

He can no longer ever be left in water unattended. That includes his nightly bath.

His pillow has to be anti suffocation as he often lies in very unusual positions during his seizures.

He cannot be left alone. Ever.

He has to be monitored all through the night.

We can never risk missing a dose of medication, having him become too overstimulated, get too hot or too cold or becoming over tired.

Everyone who cares for him has to know about his seizures and adhere strictly to his care plan.

The risks are just far too high.

Over 600 people die every year in the U.K. from SUDEP.

More people die from SUDEP in the USA than die from sudden infant death.

SUDEP is the leading cause of premature death in epileptics.

As a mother I will do everything I possibly can to make sure my son isn’t one of those statistics.