I’d never seen a seizure and never thought I would. But on March 22, 2007, I rushed my ten-month-old son Owen to the hospital after witnessing his arms and legs fly into the air and his eyes roll back. The neurologist told us that Owen had a rare and dangerous form of epilepsy. We had two medications from which to choose, both with scary potential side effects—peripheral blindness or heart failure. We were in shock.
Owen’s seizure clusters lasted anywhere from one to 23 minutes and he averaged seven clusters a day. Helplessly watching your child seize, fearing what the seizures are doing to his brain is horrifying. Like many others, we believed that with medication, epilepsy was manageable.
An added challenge is that Owen falls on the autism spectrum. Owen has been diagnosed with two horrible things, neither of which has a cure. Because some autism treatments increase the risk of seizures, we are forced to decide: Do we risk a seizure to increase communication or have a non-communicative child who doesn’t seize? No parent should have to make that choice.
We’re among the lucky few. After trying four medications, the seizures finally stopped. Owen is developmentally delayed, and at age three has about four words and cannot walk, but has a smile to die for. Owens’ numerous therapy and medical appointments have consumed much of his childhood. We have been seizure free for over a year with medication, but live in constant fear of them returning.
We don’t know what the future holds, but we’re thankful to have seizure control right now. We wouldn’t trade our sweet little boy, but we’d happily trade his epilepsy. As my husband has said, “I have part of my son; I want all of him.”