Epilepsy is not a mental health condition, it's a seizure disorder. But as many as 60% of children and teenagers with epilepsy can also experience a mental health or behavioral disorder like anxiety or ADHD.
For that reason, Hillary Kimbley, PhD, ABPP, Pediatric Psychologist at the Pediatric Epilepsy Center at Children's Health℠, is dedicated solely to supporting the mental health of kids with epilepsy and their families.
"Epilepsy can be life-changing, and it can be tough for kids to adjust to their diagnosis," Dr. Kimbley says. "I help children and families realize that this condition does not need to define a child's whole future."
How can epilepsy affect a child's mental and behavioral health?
The type of epilepsy a child has and their specific symptoms impact how it might affect their mental health. Dr. Kimbley helps kids and teens who have epilepsy with:
- Anxiety and depression related to being diagnosed with epilepsy or as a side effect of some epilepsy medications.
- Neurodevelopmental disorders like ADHD, learning differences or intellectual disability.
- Difficulty coping with their diagnosis, including dealing with feelings of fear, denial or grief.
- Learning to adjust to lifestyle changes, such as avoiding potential triggers for seizures, safety concerns or trouble sticking to their medications (called seizure self-management).
- Navigating stigma or bullying related to epilepsy.
What are warning signs of a mental health or behavioral disorder in kids and teens with epilepsy?
If you start to notice significant changes in your child's mood or behavior, that may be a warning sign of a mental health or behavioral disorder. These warning signs can be different for younger and older children.
- In younger children: You may notice more crying, tantrums, little interest in playing with other kids, increase in physical complaints with no medical cause, or seeming angrier than usual.
- In older children: You may notice your child not doing as well in school, engaging in risky behaviors, refusing to take medication, feeling very tired or not wanting to participate in their usual activities. Older children are also more likely to express thoughts of suicide.
- In both younger and older children: Changes in sleeping habits, eating habits or mood (e.g., experiencing more sadness, irritability, fear or worry).
"It can be difficult to tell if these changes are a typical part of development — like teenagers wanting to sleep a lot — or a sign of a potential mental health condition," Dr. Kimbley says. "I always tell parents you are the expert on your child, and if your intuition is telling you something is wrong, ask your child's doctor or a mental health provider. No question is silly or too small."
Dr. Kimbley says changes in behavior that are related to a mood disorder may also be:
- Developmentally inappropriate. For example, younger kids who are potty trained may start having accidents. Teenagers may start having some trouble focusing or socializing.
- Severe and disturb daily life. For example, your child is so tired that they cannot go to school, take a shower or brush their teeth.
What makes a child with epilepsy more likely to develop a behavioral or mood disorder?
A child with epilepsy may be more likely to develop a mental or behavioral health disorder if they:
- Have a family history of these disorders.
- Experience stressful life events like divorce or a death in the family.
- Take certain epilepsy medications that have side effects that include anxiety, depression or behavioral symptoms.
- Experience low self-esteem, bullying or stigma.
How are mental or behavioral health disorders treated in children with epilepsy?
Two of the most common ways include:
- Cognitive behavioral therapy (CBT), which helps children cope with anxiety and depression. CBT focuses on identifying and changing negative thoughts, feelings and behaviors.
- Parent behavioral management, which helps children with behavioral disorders and their parents. This approach focuses on using positive reinforcement for good behavior, clear expectations, consistent and appropriate consequences. It also focuses on strengthening the relationship between parent and child.
Are there challenges in diagnosing and treating mental health issues in children with epilepsy?
Yes, mental health issues can be tricky to diagnose in kids with epilepsy for three reasons:
- Symptoms or behavior may have started pre-diagnosis.
- Symptoms or behavior may have started as a result of the diagnosis.
- Symptoms or behavior may be a side effect of epilepsy medications.
One of the ways the Epilepsy Center helps catch problems early is by giving every child and teen a behavioral and mental health screening. This helps us get to the root of your child's symptoms and provide treatment as needed.
"Part of this screening is asking parents some really specific questions," Dr. Kimbley says. "We encourage parents to keep a close eye on any symptoms that appear, when they appear and what exactly those symptoms are. This helps us make a prompt diagnosis and find the right treatment, if needed."
How can parents support their child with epilepsy?
Dr. Kimbley recommends:
- Helping your child maintain a balanced diet and regular sleep schedule.
- Encouraging open and honest conversations and validate their emotions. You might say to them, "I'm always here to listen and it's OK to speak up if you're worried about something."
- Teaching them about their emotions and how to talk about what they are feeling. For example, if your child seems worried, you might say, "Are you worried right now? Let's take some deep breaths together."
- Creating time and space for a child to check in with their own emotions. This might mean asking them how they're feeling or encouraging them to journal or process emotions in another way that works for them.
- Modeling healthy coping skills. This might mean sharing how you are feeling with them and what you plan to do to feel better. You might say, "I'm feeling stressed right now, so I'm going to go for a walk and listen to some music."
- Building a child's support system. For example, connecting with other families that have children with medical conditions or joining a support group.
- Getting professional help if you want more support or guidance.
"Parents are often really hard on themselves and feel like they should know exactly what to do. But sometimes you don't and that's OK," Dr. Kimbley says. "Don't feel embarrassed or silly. I encourage all our families to reach out with any and all questions."
Fostering independence and normalcy in children with epilepsy
One of the most common things Dr. Kimbley hears from kids is that they just want to feel "normal" and do the same things their friends are doing.
She works with families to take small steps toward that, especially for kids who have a lot of restrictions. This can include reestablishing or reconstructing daily routines or responsibilities and encouraging age-appropriate activities (e.g., spending time with friends or participation in hobbies and extracurricular activities).
"It might be having them go over to a friend's house for an hour at a time, or having your child's friends over to your house," Dr. Kimbley says. "It may be helping other adults in their life know what to do if your child has a seizure so your child can have more flexibility. We work together to figure out what works for your family and find the right balance."
How can kids and teens with epilepsy improve their mental health?
- Write down any questions you have about epilepsy and how it might impact your life. No question is too small.
- Speak up. If you are feeling sad, uncertain or anxious, tell a trusted adult.
- Get sleep and eat a balanced diet. This goes a long way when it comes to feeling mentally strong.
- Continue to set goals, even if they must be modified. Goal setting increases motivation, adds meaning to life and helps to overcome challenges.
- Stay connected to your support system. Isolating from others can worsen mental health and wellbeing.
- Develop coping skills. This can include things such as listening to music, journaling, reading and exercising.
Don’t lose hope. It's OK to feel sad or uncertain about your diagnosis. But know that even if your future might look a little different than you thought it would, we can find ways to help you achieve your goals and aspirations. You are still in control of your life and what you want to achieve.
Mental health resources for children with epilepsy
- Epilepsy Foundation
- American Academy of Neurology
- American Epilepsy Society
- Epilepsy Foundation of Texas
- National Association of Epilepsy Centers (NAEC)
- The Epilepsy Learning Healthcare System (ELHS)
- Teen Guide to Epilepsy Surgery (English | Spanish)
Epilepsy 101 (for parents and caregivers)
Explore resources to help you support your child with epilepsy and tune in to the Children's Health Checkup podcast for a three-part series focused on understanding and managing epilepsy in children (available in English and Spanish).
Learn more
Children's Health provides comprehensive, expert and compassionate epilepsy care, close to home for families in Dallas and Plano. Learn more about our Pediatric Epilepsy Program.
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