sobering SUDEP

Most people have never heard of SUDEP. It stands for sudden unexplained death in epilepsy. It’s real and it’s scary, particularly for people like us.

Although not enough is known about why SUDEP occurs, it seems clear that there are a number of contributing factors that would predispose one to the risk, almost all of which, most soberingly, apply to our little boy Calvin.

Calvin is at greater risk of succumbing to SUDEP because he has uncontrolled tonic-clonic (grand mal) seizures. His risk is ten times higher than the risk for those with epilepsy who have only one to two tonic-clonic seizures annually. Calvin has close to fifty each year and, in the past, has had more than double that. Additionally, Calvin takes a combined regimen of antiepileptic drugs (AEDs)—called polytherapy—which also raises his risk. Moreover, one of his drugs’ many side effects is respiratory suppression, a factor that itself increases the risk of SUDEP. Early onset of epilepsy (before the age of 16) is another contributing factor. Calvin started having seizures by the time he was two years old. Having seizures during sleep increases the SUDEP risk and, historically, most of Calvin’s seizures have been nocturnal. Lastly, males are identified to be more prone to SUDEP when compared with females.

The nature of Calvin's intractable epilepsy requires that Michael and I walk around wearing a baby monitor tied to a ribbon around our heads, like a headband, anytime Calvin is sleeping. This way we can hear every little sigh and hiccup—or tonic-clonic seizure—that he might have. Although Calvin’s room is attached to ours we’ve got that damn monitor on full blast hissing white noise all night long from the nightstand near my head. I wake often, at times more than once an hour, if I hear him make any unusual sounds or if I suspect a looming seizure. I creep to his cribside and shine the flashlight on his lips to ensure that they are pink. Nights when he sleeps soundly and mornings when he sleeps in late I fear most of all. I dread going to his bedside on quiet mornings afraid I’ll find him dead. I’ve known of parents who have lived this most wretched nightmare of all: waking to finding their child lifeless. Gone.

We could eradicate SUDEP if we could find a cure for epilepsy. The only way we are going to find a cure for epilepsy is if we increase society’s awareness of the disorder and expose it’s grave impact on the millions of families and individuals who suffer from it. We must unmask the obscure reality that epilepsy research is grossly underfunded, especially when compared with other neurological disorders that impact far fewer people and that don’t affect children.

Please offer a few seconds of your time to share Calvin’s story. Help bring us one step closer to a cure for epilepsy. It’s not hard, just do it one story at a time. It's as easy as pushing a button.

photo by Michael Kolster

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