Caring for A Child With Epilepsy

Roughly half a million U.S. children under age 18 are living with epilepsy. Childhood epilepsy can take many forms.¹

For some, it is a manageable condition controlled with anti-seizure drugs, surgery, lifestyle changes, or diet. Some children have types of epilepsy that they grow out of. For these children, school, friends, and extracurricular activities may look much like that of any child.

Other children with epilepsy face great challenges. When their seizures cannot be controlled, it can cause life-long challenges in learning and behavior. These children may become isolated, get bullied, and struggle with self-esteem. Of course, these challenges impact the whole family in a variety of ways.

Supporting your child with epilepsy

The things you need to do for a child with epilepsy will change as the child grows. Some basic care that is required from infancy to the teen years includes:^2,3

• Talk about epilepsy in an age-appropriate way with your child
• Encourage friendships, sports, and hobbies
• Explain epilepsy to family, friends, teachers, and others who interact with your child
• Make sure they take their medicine as prescribed
• Set schedules that encourage enough time for play, exercise, homework, and sleep
• Teach seizure first aid to people most likely to be around your child during a seizure
• When and if your child is able, help them transition to adult care

Sometimes, parents worry about upsetting their child, thinking it will trigger a seizure. Your child still needs limits and rules to follow. Their epilepsy doctor, nurse, or social worker may have helpful suggestions about discipline.³

Supporting your teen with epilepsy

Your child will face all the usual challenges and risks of any child as they grow into a tween or teen, plus some extras. Keeping the lines of communication open can be one of the best ways to help your child stay safe and healthy. Talk with your teen about:³

• When and how to talk with a date about their epilepsy
• Feeling different due to their epilepsy or other common teenage concerns
• Puberty and body changes. Girls especially may face seizures triggered by their periods.
• Talking about epilepsy with their friends
• Use of alcohol and illegal drugs, which are especially dangerous for teens with epilepsy
• Independence, responsibility, and consequences
• Ways to monitor and communicate when away from home

One of the most important things a teen with epilepsy needs to learn is how to care for themselves. Practicing while still at home helps ensure a smoother transition to adult care later. Some things a teen can do to take responsibility for their health include:³

• Making doctor’s appointments and putting the date on the family schedule
• Keeping track of prescriptions and calling for refills when needed
• Asking their medical team questions
• Understanding their medical history, including their type of epilepsy, their triggers, and which drugs they take and have taken in the past

Some pediatricians encourage this transition by asking caregivers to leave the room for some part of an exam. This gives the teen an opportunity to freely ask questions about their changing body, sexuality, and other teen issues.

Finding community support

Caregiving is hard, demanding work. According to the Family Caregiver Alliance, roughly 6 out of 10 caregivers show signs of depression. Finding support can ease your load. Some suggestions include:^3,4

• Finding daycare for a child with epilepsy can be difficult. Some centers may not admit children with epilepsy or refuse to give emergency anti-seizure drugs. Your local chapter of the Epilepsy Foundation can provide legal information about this.
• Connect with other parents whose children have epilepsy. The Epilepsy Foundation offers a variety of support services through local chapters. Find them at https://www.epilepsy.com/affiliates.
• Join a discussion forum like the ones here on EpilepsyDisease.com.
• Nonprofits may offer respite services for caregivers of those with epilepsy. Respite care is short-term care for people with disabilities that gives their loved ones a break.

Your child’s epilepsy care team may offer valuable support. Remember, asking for help or admitting you cannot do it alone is nothing to be ashamed of. Dealing with the daily challenges of epilepsy can be stressful.

Financial burden of epilepsy

Having a child with epilepsy puts a strain on the family’s budget. Among the 5 most common childhood chronic conditions, epilepsy costs the most. Children with epilepsy are more likely to live in poverty, and their parents report food insecurity more often. This is especially true for families who have a child with uncontrolled epilepsy.¹

Several federal programs may help ease the financial burden of caring for a child with epilepsy. The Family and Medical Leave Act (FMLA) guarantees qualified workers up to 12 weeks of unpaid leave each year, which you can use to care for your child. Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) may also be options.

Your child’s healthcare team may help you file for SSDI or SSI. They may also know of local programs that cover health care costs of children with epilepsy.

Caring for a child with epilepsy can be overwhelming at times. Remember, you are not alone. Family, friends, healthcare workers, and other parents who understand your concerns are available for support.