Epilepsy Education for Parents and Caregivers
It's estimated that 1 in 26 people will develop epilepsy at some point in their lifetime. Approximately 470,000 children in the U.S. are affected by epilepsy, representing about 0.6% of those under 17 years of age.
Education enables parents and caregivers to be effective advocates and sources of strength for their children, helping to improve the child's quality of life and overall well-being.
Here, you'll find resources and advice to empower parents and caregivers in guiding their children through the journey of living with epilepsy.
Understanding and Managing
Your Child’s Seizures
Recognizing Seizure Types
● Epileptic seizures in children can vary widely. Common types include absence seizures (brief loss of awareness), tonic-clonic seizures (convulsions with muscle rigidity and jerking), and focal seizures (affecting only one part of the brain).
● Educating yourself on recognizing these types is crucial for effective response and care.
What to Do During Your Child’s Seizure:
● Keep calm and note the time.● Gently guide your child to the floor, if they are not already there, to prevent falls.● Place something soft under their head.● Clear the area of sharp or hard objects.● Do not hold your child down or put anything in their mouth.● Turn your child onto their side to help breathing.● Stay with your child until the seizure ends naturally.● If the seizure lasts more than 5 minutes, or your child has multiple seizures without regaining consciousness, seek emergency medical help.
Post-Seizure Care
● Post-seizure, your child might feel tired or confused. Ensure they rest in a safe, quiet place.
● Monitor their condition and consult with a healthcare provider if you notice any unusual post-seizure behavior or physical harm.
Seizure First-Aid
Learning seizure first aid is crucial for parents and caregivers of children with epilepsy, as it enables them to provide immediate and safe care during and after seizures.
Developing a Home Seizure Care Plan
Creating a Safe Environment● Childproof your home by securing furniture, using protective padding, and ensuring swimming pools have safety gates. Keep a first aid kit and emergency numbers accessible.
Routine Management● Establish regular routines for medication, meals, and sleep to help manage your child’s epilepsy. Track seizure triggers and discuss them with your child's healthcare provider.
Emergency Planning● Create an emergency plan that includes detailed instructions on handling seizures, a list of medications, their doctor’s contact information, and a medical ID bracelet for your child.
Explaining Epilepsy to Siblings and Other Family Members
Fostering Empathy and Understanding
● Encourage open conversations. Let siblings and other family members express their feelings and concerns and reassure them. Teach them how they can help during a seizure.
Involving Siblings and Other Family Members in the Care
● Involve siblings and other family members in care routines in age-appropriate ways, like helping to set timers for medication or creating a 'seizure safety' plan together. This promotes empathy and family unity.
School and Education
Navigating School with Epilepsy School can be a fulfilling experience for children with epilepsy, with the right support and understanding from school staff and peers.
● Effective CommunicationMaintain regular and open communication with your child's teachers and school staff. Ensure they understand your child's epilepsy and what they can do to help.
● Empowering Your ChildTeach your child to advocate for themselves as they grow older, helping them to understand their condition and the type of seizures they experience and communicate their needs to teachers/other school staff and friends.
● Developing a School Seizure Action Plan and/or search for Seizure Action PlanWork with your child's teachers and school administration to create a plan tailored to your child's needs. This plan should include details about medication management, procedures for handling a seizure, and any specific academic accommodations your child might require.
What should be included in your child’s
Seizure Action Plan ?
Personal Information:
Child's name, school grade, emergency contact information, etc.
Medical Information:
Type of epilepsy and seizures, list of current medications, and any known seizure triggers.
Seizure Action Steps:
Detailed instructions on what to do in case of a seizure, including when to call for emergency services.
Post-Seizure Care:
Guidance on care after a seizure, such as rest areas and monitoring.
Academic Accommodations:
Specific adjustments needed in the classroom, like additional time for tests, a quiet space for exams, or breaks during the day.
Emergency Contacts:
Names and numbers of the child's healthcare providers and an emergency contact list.
Review and Update:
A reminder for the school to review the plan annually or when there are significant changes in the child's health or treatment.
Transition Planning
As your child enters adolescence, it's essential to foster their independence and self-confidence in managing their epilepsy. Proactive planning can help address these changes and ensure ongoing support for your child.
Transitioning from Child to Adolescent Care
As your child grows, there may be a transition in their healthcare. It's important to prepare them for this change and encourage their active participation in discussions with healthcare providers.
Teaching Children to be Active in Their Care
Empower your child to take an active role in managing their epilepsy. It is important to encourage them to learn about their condition, recognize triggers, and take responsibility for medications under supervision.
Healthcare Transition
Discuss the transition from pediatric to adolescent healthcare with your child's healthcare provider. Ensure your child is prepared for more active involvement in medical discussions and decisions.
Preparing for Adulthood
Becoming an Adult with Epilepsy
ransitioning into adulthood involves greater responsibility for healthcare decisions. Empower your child to take ownership of their epilepsy management.
Healthcare Independence
Encourage your child to schedule and attend their medical appointments independently. Teach them to communicate effectively with healthcare providers about their epilepsy care.
Lifestyle Choices
Discuss lifestyle choices that can impact epilepsy management, such as sleep, stress management, and nutrition.