November is Epilepsy Awareness Month. Although largely unspoken about, epilepsy is the fourth most common neurological condition, affecting 1 in 26 people worldwide. Nearly half a million children in the United States live with epilepsy. My child is one of them.
What Is Epilepsy?
Epilepsy is diagnosed after an individual has two unprovoked seizures. Oftentimes, the events are recurring, even after introducing anti-epileptic drugs (AEDS). The diagnosis can happen at any age. My child was three months old.
For six out of ten people, the cause of their Epilepsy is unknown. And although two people can carry the same diagnosis, their seizure presentation can vary significantly. We often see seizures depicted as convulsions; however, this isn’t always the case. There are many different seizure types, and oftentimes one person will experience a variety. Some seizure types, like my child’s, are hard to detect. To the untrained eye, it might look like behavioral arrest, fright, or confusion. But caregivers know it’s a seizure.
Here’s a detailed list of different seizure types, and their presentations, from the CDC.
There’s a good chance that people within your community are living with Epilepsy. Here are some important details to know:
Basic Seizure First Aid
To start, not all seizures are emergencies, especially if the person is living with an Epilepsy diagnosis. However, it’s vital that the person suffering a seizure is safe, and protected from injury. Generally, these are the most important tips*:
- Stay calm.
- If the person having a seizure has fallen, protect their head, and gently roll them to their side.
- Never put anything in their mouths, and do not restrain them.
- Time the seizure – if the seizure lasts more than 5 minutes, call 911. *However, when in doubt call 911 and/or your healthcare provider for guidance on how to proceed.
*For Epileptics, their individual Seizure Action Plans might vary, and involve rescue medication for specific seizure types, or durations. Much like an EpiPen, seizure rescue meds are fast-acting drugs that mitigate the risk of a life-threatening event.
For more information on seizure first aid, you can learn more from the Epilepsy Foundation.
Seizures are scary – both for the person having one, and those who are witnessing. There’s also a fear of the unknown. However, children and adults with Epilepsy can lead full, active lives. When speaking with your child about seizures, it’s helpful to remain matter-of-fact, and positive. It’s also important that children understand seizures aren’t contagious, or a sign that there’s anything “wrong” with a person – they’re experiencing a medical situation that requires attention, just like a broken bone, or an asthma attack. Below are some kid-friendly book suggestions to broach the topic in more approachable manner:
- Let’s Learn With Teddy About Epilepsy, by Yvonne Zelenka
- Taking Seizure Disorders to School, by Kim Gosselin
- Wally the Whale: A Tale About a Whale With Seizures, by Sara Manning
- The Adventures of Oskar: Oskar’s New School, by Jose a. Saldivar
- Mommy, I Feel Funny! A Child’s Experience With Epilepsy, by Danielle M. Rocheford
All too often we see and hear about seizures as some sort of twisted punchline – someone dances like they’re Epileptic, or a hard-to-read passage causes a reader to have a seizure. For adults and children who are navigating these frightening medical situations, these throwaway comments have a lasting impact. During Epilepsy Awareness Month and beyond, let’s try to be more sensitive, and understand that seizures aren’t a joke. I wish, with all of my being, that I could stop them – for my child, and everyone else’s.
If you’re interested in learning more about Epilepsy Awareness Month, please check out The Epilepsy Foundation.
Lahna Son-Cundy lives in Newport, RI with her husband and two kids.
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