A Ticking Time Bomb: Navigating Ashton’s Epilepsy

This new epilepsy journey has been one of the hardest parts of Ashton’s life so far. We have been in ambulances, emergency departments, and countless specialist appointments over the past month as the frequency of his seizures increases. Each episode brings a wave of fear, knowing that every seizure carries immediate risks and that our plans must adapt on the fly. We already knew from his paediatrician and emergency doctors that every seizure he has is a type known as 'status epilepticus', a life-threatening seizure that does not stop on its own and puts his brain at immediate risk of permanent damage or even death. Hearing this confirmed by the head of neurology last week was crushing. Knowing your child is essentially a ticking time bomb is terrifying. Then the very next day he collapsed again and had a whole new type of seizure, cluster seizures, just when we had adapted to his very long 30 minute plus GTC ones.

The neurologist explained that Ashton’s epilepsy may stem from the white matter damage caused by his many brain bleeds as a premature baby, from his autism, or from both. The plan remains to wait for the next seizure and increase his medications after each one, which feels like such a powerless approach.

The neurologist also confirmed what has now become our reality. Our family travel must be limited to places with a hospital close by and we always need to know that ambulances are within reach. His paediatrician and GP have also started discussions with us about equipment we may need at home, including emergency oxygen and airway support, so that we can respond as quickly as possible if Ashton’s breathing becomes compromised during a seizure. Simple outings carry an extra layer of planning and worry as every decision is shaped by the possibility of the next seizure.

On top of the epilepsy, Ashton’s breathing in general has continued its slow decline since February this year. We are trialling new medications and have three upcoming appointments with different respiratory specialists at RCH, hoping for some positive news.

We are utterly exhausted. Az and I are taking timeouts and doing counselling, but nothing eases the constant fear or hypervigilance. What helps most is celebrating life where we can, catching up with friends, enjoying a BBQ, and sharing laughter. These moments refill our hearts and give us strength.

To everyone checking in, inviting us out, or simply calling, thank you. Your love and care truly keep us going. 💚 NICU Cheer - with the help