• Parents, caregivers, and clinicians can help shape a child’s attitude about epilepsy from an early age.
• As your child grows, they should become more educated about epilepsy and increasingly take on medical care responsibilities.
• Your teen’s pediatrician can work with them to develop a transition plan for navigating the adult health care system more independently.

Parenting includes equipping your child with the skills they’ll need to live as a successful adult. Having a child with epilepsy can introduce a new layer of challenges to that process. You can help encourage your child’s independence by giving them age-appropriate responsibilities and teaching them important life skills to manage their condition in the real world. Not only is this a gift to them, but seeing them empowered to achieve their best quality of life with epilepsy can also give you peace of mind.

Building Independence in Young Children

Start early by teaching your young child about their condition. If you don’t know much about pediatric epilepsy, educate yourself on the essentials, and ask lots of questions during doctors’ visits so that you and your child can learn together. Keep conversations positive by emphasizing your child’s strengths as you discuss their treatment and future. You can show your child by example that they shouldn’t be ashamed or afraid to explain epilepsy to others, including their friends and teachers. Remember, most children with epilepsy can grow up to drive, work, attend college, and raise families of their own. Don’t lower the bar for your child or allow them to limit their expectations unnecessarily. Instead, help them build a tool kit they can use to succeed.

Emphasize the importance of healthy routines starting at a young age, including good sleep and eating habits and taking medications on a consistent schedule.

Emphasize the importance of healthy routines starting at a young age, including good sleep and eating habits and taking medications on a consistent schedule. Additionally, parents of children with epilepsy shouldn’t shy away from normal discipline and boundary setting. Being too lenient because you’re worried that a tantrum may trigger seizures is usually unwarranted and can lead to bigger issues down the road. Ask your child’s pediatrician for feedback on managing behavioral issues if you have concerns about how to parent a child with epilepsy.

Watch for Signs of Low Self-Esteem

Having a chronic condition like epilepsy can affect a child’s self-perception. However, people with good self-esteem are motivated to care for their health. Therefore, parents should be on the lookout for signs that their child or teen has low self-esteem and aim to support them in developing a stronger sense of self and fostering good mental health.

Children with low self-esteem may come across as overly sensitive, inflexible, and critical of themselves. They may feel the need to lie or cheat to avoid failure or give up quickly rather than lose. Low self-esteem also leads some children to blame others or make excuses when things go wrong. They may become socially withdrawn and less willing to participate in activities, which can have negative social outcomes in the future.

If you suspect your child’s self-esteem needs a boost, clear some time in your schedule to express more interest in what they’re doing. Give them opportunities to speak, and listen without judgment. Ask follow-up questions to show you’re paying attention. Letting young people make decisions when possible shows that you trust them to make good choices. You can also boost your child’s sense of community and purpose by volunteering together. Sharing your love for your child and encouraging them to accept the praise that’s deserved will help them feel worthy and appreciated.

Preparing Your Teen for the Future

Raising a teenager is rarely easy, but parents of teens with epilepsy may be particularly anxious about navigating issues like substance abuse, peer pressure, and driving. Teens with epilepsy need to understand that experimenting with alcohol and drugs can be even riskier because of their condition. They also need strategies to handle challenging situations, including knowing where to find support and how to focus on finding friends who are positive influences.

Driving laws vary by state, and you’ll want to ask your child’s health care provider whether it’s safe for your child to drive independently. The Epilepsy Foundation offers a free search tool you and your teen can use to research driving laws by state. If your teen spends more time away from home, it’s important to set up systems to monitor their safety without risking pushback by being overly invasive of their privacy. Involving your teen in decision-making processes will help them feel like they have a say and are being respected.

Teens mature at different rates, but you should encourage them to practice health care-related tasks such as these:

• Ask questions during medical appointments.
• Call their doctor’s office to report any seizures.
• Keep a log of seizures.
• Make a list of their medications, and take it to appointments.
• Track how well they’re following their care plan and taking medications.

Your teen can also work with their doctor to develop a seizure action plan. Participating in these activities can help your teen feel more confident and in control of their condition.

Also encourage your teen to get a medical ID, such as a bracelet, to alert others of their epilepsy and how to help in the event of a seizure. Wearing an ID may help them feel more comfortable traveling to unfamiliar places or around people who don’t know about their condition.

Have Important Conversations

Part of transitioning from childhood to adulthood is understanding and preparing for risks in life. One risk young people with epilepsy should know about is sudden unexpected death in epilepsy (SUDEP). This term is used when someone with epilepsy dies without warning, and there is no apparent cause of death. While rare, SUDEP is more common in people with frequent or uncontrolled seizures. The best way to prevent SUDEP is to prevent seizures.

Talking about death with your child or teen can be uncomfortable, but it’s important to ensure they understand what SUDEP is and how to avoid it. Responsible epilepsy self-management includes taking antiepileptic drugs and other therapies as prescribed, making healthy lifestyle choices, identifying seizure triggers, and scheduling regular medical appointments.

Know When To Step Aside

Perhaps the hardest aspect of parenting is letting go and giving your kid a chance to sink or swim. It may be tough to step aside, but never allowing your child to fail does them a disservice by robbing them of important opportunities to learn and grow. In addition, being too restrictive can backfire and build resentment. “When I was younger and living with an overprotective parent, it made me fight harder for independence,” shared a MyEpilepsyTeam member. It can be difficult to strike the right balance, but try to turn any mishaps into learning experiences.

Transitioning From Pediatric to Adult Care

Your child’s doctor can be a great support and resource during the transition process from pediatric care to young adulthood and a new primary care team. Ask for recommendations and referrals for adult epilepsy care, including an adult neurologist and any other adult services that may be needed. If your young adult plans to relocate for college or a job, have them help with researching new adult providers in their area and scheduling appointments. They should also connect with groups for epilepsy (either in person or online) to establish a supportive network during this transition of care.

The more ownership you can give your child throughout the process of securing health care, the better equipped they’ll be to take control of their condition management in the future.

Telehealth services can help young people stay connected to their epilepsy providers and continue to get their health care needs met after a move for school or work. According to the American Epilepsy Society, telehealth can increase access to care and quality of care for people with epilepsy. Your teen may consider a hybrid approach, where they use telehealth to stay connected to their current epilepsy care team and find a primary care provider they can see in person closer to their new home.

Have your teen schedule an appointment with a social worker or an insurance agent who can help them understand their coverage options when aging out of their parent’s plan. The more ownership you can give your child throughout the process of securing health care, the better equipped they’ll be to take control of their condition management in the future.

Tips From MyEpilepsyTeam Members

Some members of MyEpilepsyTeam had childhood seizures and recalled their parents’ positive influence.

One member encouraged parents to empower their children: “Give them confidence, strength, and independence. That is what my mother did for me. I started getting complex partial seizures when I was 12. Now I am 52. I worked. I didn’t let epilepsy take over my life. Don’t let your child give up in life.”

Another said, “As a child who had epilepsy, the most important thing to me, at that time, was to know that I was loved for who I am. My parents always encouraged me to look on the bright side despite the seizures and reinforced that everything was going to be OK!”

Remind your child that epilepsy is part of who they are, but it doesn’t define them. While they may need to take certain precautions, they can still enjoy a full and productive life by focusing on their strengths.

Talk With Others Who Understand

MyEpilepsyTeam is the online social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 122,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

How do you manage childhood-onset epilepsy while setting your child up for a successful future? If you raised a child with epilepsy, do you have advice on facilitating a smooth transition to adult life? Share your experience in the comments below, or start a conversation by posting on your Activities page.