Child Life Support for Families with Epilepsy
Meet Charlotte and her mom, Kate. Kate is the founder of Brave Bears Club, and she is dedicated to creating a more inclusive world for children with epilepsy.
Epilepsy is a condition that causes the brain to have seizures. While it can feel frightening, it’s important to know that many children with epilepsy live full, active lives. As a parent, you may feel uncertain about what comes next , that’s normal. Learning step by step, and knowing you don’t have to figure it out alone, can make a big difference.
Understanding Epilepsy in Children
Epilepsy is a condition that causes the brain to have seizures. While it can feel frightening, it’s important to know that many children with epilepsy live full, active lives. As a parent, you may feel uncertain about what comes next — that’s normal. Learning step by step, and knowing you don’t have to figure it out alone, can make a big difference.
Preparing Your Child for Procedures
Medical tests and appointments can be overwhelming for children. Here are some ways to help your child feel safe and supported:
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EEG Prep: Explain that the “special stickers” on their head will help the doctors understand how their brain works. Let them know the stickers don’t hurt.
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MRI Scans: Talk about how the machine makes loud noises, like a drum or spaceship, and practice lying still together at home.
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Doctor Visits: Create a coping plan with choices your child can make, like bringing a favorite toy, listening to music, or sitting on your lap during part of the visit.
Small steps like practicing at home, offering choices, and using simple language help your child feel more in control.
Daily Life & Coping at Home
Epilepsy is only one part of your child’s story. You can support your family by:
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Talking with Siblings: Give brothers and sisters space to ask questions and share feelings. Simple explanations and reassurance go a long way.
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School & Activities: Work with teachers and caregivers to create a plan that makes your child feel included and safe.
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Routines & Play: Keep as much of your family’s routine as possible. Predictability helps children feel secure.
Remember: it’s okay to ask for help. You don’t have to manage everything on your own.
Parent Stories & Support
Sometimes the most powerful support comes from hearing another parent say, “I’ve been there.”
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Listen to parents share their epilepsy journeys on the Child Life On Call Podcast.
- Hearing real voices can remind you that you are not alone, and there is a community ready to stand with you.
Resources we trust & recommend:
Certified Child Life Specialists (CCLS) are trained professionals who support children and families during medical experiences or traumatic events, helping kids understand what’s happening, express their feelings, and build coping skills through developmentally appropriate support.
Learn more about child life specialists here
