When your child needs epilepsy surgery, it can feel overwhelming. You may have a lot of questions: What happens next? How do I prepare? And what comes after surgery?

We get it! That’s why we created The (Almost) Everything List—a practical, easy-to-use guide with the latest resources to support your family before and after epilepsy surgery. Whether you’re preparing for surgery or navigating life afterward, this guide was created with families like yours in mind. 

Even if your child hasn’t had surgery but lives with drug-resistant epilepsy, many of the resources in this guide can still help your family with medical care, school support, and more.

What Is The (Almost) Everything List?

This curated list covers almost everything you’ll need to feel more prepared and empowered. It’s broken down into key categories, so you can quickly find the information and services you need without spending hours searching.

Before Surgery: Getting Ready

As surgery approaches, you may feel a mix of emotions—hope, worry, fear, and relief. The (Almost) Everything List is here to help guide you so you can focus on what matters: getting your child ready and feeling confident about the steps ahead.

• Understanding the Surgery Process: Learn about different types of epilepsy surgery, what to expect on surgery day, and how to talk to your child’s medical team. You’ll also find tips for explaining surgery to your child.
• Pre-Surgery Emotional Support: Surgery can feel scary. This list connects you with counselors, support groups, and resources to help your child with any anxiety or fear they may have.
• Preparing for Post-Surgery Care: Recovery is key after surgery. Find information on what to expect, such as follow-up appointments, therapies, and when your child can return to school.

After Surgery: The Road to Recovery

Once your child is home, healing, and long-term care become your focus. The (Almost) Everything List provides resources for this recovery phase.

• Medical Follow-Up: Stay on top of your child’s medical care with tips on managing medications, check-ups, and finding specialists.
• Managing Medications and Seizures: Even after surgery, some children need to keep taking medication or be monitored for seizures. The List incldues tools for tracking medications and seizure monitoring.
• Communication with Providers: You’ll work with many professionals, including doctors, social workers, and therapists. This guide helps you coordinate care and ask the right questions.

Life After Epilepsy Surgery: The Long Journey

After surgery, recovery continues in everyday life. This part of the guide helps you navigate education, adulthood, and emotional support:

• Educational Support: School can be challenging for children after epilepsy surgery. Find tools for preschool to college-aged students to set up IEPs and 504 Plans, access therapies like speech or occupational therapy, and get the right accommodations. 
• Building Independence and Life Skills: The List offers programs and advice on teaching life skills, managing medications, and preparing for adulthood. 
• Therapy and Rehabilitation: Learn about therapies to help your child regain strength and skills after surgery.
• Mental Health and Emotional Support: Surgery can be emotionally challenging for both your child and your family. Find resources for counseling and support groups.
• Parent and Family Support: You’re not alone in this. Find resources to connect with other caregivers and families, find online communities, and get support from those who understand your journey.
• Financial and Legal Help: From understanding insurance coverage to exploring financial aid options, this section guides you through the maze of paperwork and costs. It also includes resources on disability benefits and scholarships your child may qualify for.

Why You Need This List

Raising a child who needs epilepsy surgery is a marathon, not a sprint. There will be ups and downs, but having The (Almost) Everything List gives you the tools to make sure you’re supported.

If your child is living with drug-resistant epilepsy but has not had surgery, many of these resources—like help with school plans, therapy, and emotional support—can still make a big difference in your family’s journey.

Ready to Dive In?

Download The (Almost) Everything List today and feel confident knowing you have a trusted guide by your side. Whether preparing for surgery or supporting your child afterward, this list has what you need to keep moving forward confidently.

The (Almost) Everything List is made possible thanks to the generous support of Takeda Pharmaceuticals.