Runaway Epilepsy

It has been one of those weeks when you think nothing else could possibly go wrong and then it does. I seem to have a lot of weeks like this, but this week has been a real doozey!
The week started with such promise. It was a perfectly normal beginning. I was busy with the kids, but no medical appointments or therapy sessions. It was just normal stuff with school, music and sport.
By midweek, I was enjoying some “down time” and cooking an early dinner and getting on top of the mountain of clothes washing I had to do. I was listening to some music while in the kitchen when my phone rang. It was my little man’s school. Twelve months ago I would have dreaded a phone call from the school, but today I answer it with confidence.
“Hi Kelly. It’s Mary from school.”

“Hi Mary.” I reply and think to myself that Mary sounds like she has been running and is totally out of breath.

“…..You need to get in your car…. He’s run away from school…. He was heading towards your home.” Mary says trying to remain calm.

“Okay I am on my way,” I tell Mary and hang up.

I’ve just cut up an onion and carrots. I turn off the saucepan and start searching for shoes and car keys. I quickly find both and bolt out the door and head to the car.
It has been more than two years since he’s run away, but I know the drill. He’s heading home. I drive slowly up the road looking for him. Heading from the other direction is Mary and the school principal. I panic. Where can he be? Why haven’t we spotted him by now?
The principal points to a side street. We turn into it and find my little man with the deputy principal. I stop and get out of my car. My little man is a mess. He has tears rolling down his face and snot pouring out his nose. He’s knees are scuffed and covered in tree bark and grass.
“I found him hiding in the tree. He’s okay we were just heading back to school now,” the deputy reassures my son and me.
“Mum, how long am I going to lose technology for?” my little boy asks sadly.

I ask him if he’s okay and tell him that’s all that matters. The kind principal gently suggests I take him home. The principal knows this isn’t the time to tell my son he’s in trouble or to teach him a lesson about running away. This is a child that’s not coping. He’s a little boy that just needs his mum.
We drive home and he hops in the shower. The water helps calm him. It gives me time to think and gather my thoughts. I call the hospital and speak with the psychologist that he’s been seeing for the past few months. I explain what’s happened. She suggests I keep things calm for him.
Two years ago he would regularly run away. We blamed his anti-seizure medications. We stopped his medications and his behaviour improved. The great escapes stopped and he became a “normal” kid again.
Sadly seizures began to return and an overnight eeg confirmed epilepsy was still lurking. We made the decision to medicate our son with a small dose of anti-seizure medication. Everything was going well until another status seizure hit at night. His meds were doubled and then tripled.
He was going okay, but things started to unravel about a month ago. Running away was the final straw.
I called the neurology department at the hospital and told them what had happened and that we were planning to stop his medication. We lived through absolute hell when he was previously medicated and out of control. We’ve seen this behaviour before and there is no happy ending.
The hospital has advised against removing the medication and believes our son will have seizures without meds. I tell them I am more concerned he could be hit by a car when he runs away.
I really don’t want him on this medication anymore, but I reluctantly agree to slowly reduce the dose. We will see if he can tolerate a lower dose that will also stop the seizures. I hate epilepsy. I hate the drugs. There is no winning today for our son. This is his sixth anti-epileptic drug. He’s running out of options. So for now, we watch and wait.
Take care, Ragdoll Mumma Kelly xo

3 thoughts on “Runaway Epilepsy

  1. I hate epilepsy too…. looking for the positives….hmmmm hmmm He has great directional sense, I don’t think my boy could find his way home when running in a frenzy to get home to his mum. I wish I could make it go away for you.


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