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SUDEP and Other Scary Things

Seizures are basically chemical communications in the brain misfiring, and most of the time cause a person to lose consciousness of the world around them. With some seizures, not the entire brain is affected but with most it is. There’s always a risk of the person losing the ability to breathe, which along with damage done to the brain, is a reason why it’s important to have some sort of medical care when you or your family member has epilepsy. 

As a mother to a child recently diagnosed with epilepsy, I was terrified because I don’t like things I can’t understand. I have the general “normal” fears that most people have; heights, airplanes… Stairs without risers… Okay that last one might not be as normal but you never know what’s below the stairs. I didn’t think I would ever have to legitimately fear my child dying before me. I recognize that a part of this is white privilege, as most white people without disabled family members don’t have to fear their kids dying before them, but that’s how things were for me. The day she got diagnosed and we went home, I started doing a lot of research on epilepsy and what causes it, how to prevent it, what different types of seizures are, and this thing called “sudden unexpected death in epilepsy.” To this day, I still do not stop checking on her in the middle of the night. I do not sleep well, and not having access to a working phone that anyone who has my child can reach me on causes massive anxiety for me.

There are several reasons for this — the biggest ones being the fact she always needs medical intervention if she has a seizure, and the potential of SUDEP. It took me awhile to actually fully understand what SUDEP is — it’s when someone has a seizure, comes out of it fine, and dies unexpectedly within hours or a day or even a week later with no explanation. No one knows what causes it. I choose to state this baldly, because I personally would rather actually have something like that bluntly stated instead of finding out after this randomly happens to my family member that this is the case, and everyone else chose to dance around it and not actually outright state it, which is misleading at best.

 There are a few things that can raise the risk for SUDEP, as well as dying from a seizure. Nocturnal seizures and uncontrolled seizures are two of the main factors. Nocturnal seizures are what they sound like — seizures that happen at night. They’re less likely to be caught and therefore less likely to be stopped or treated. Uncontrolled seizures are seizures that happen with or without medication. The longer a person lives with uncontrolled seizures, the more likely they are to die from SUDEP or a seizure, or injuries caused by a seizure. Seizures that start at a young age and missed medications, as well as multiple instances of status epilepticus (seizures lasting a long period of time, generally requiring medical intervention to stop) are also factors in SUDEP.