Epilepsy Center | Patient Resources

We’re here to help you navigate the complex world of epilepsy. We aim to treat your whole child and support and guide your family.

Children with epilepsy are more likely to have learning challenges, and many kids with intellectual disabilities also experience seizures. It’s important to think about ways to help these children learn while keeping them safe in the classroom; this may involve adaptions to help with learning and seizure management.

We can work and your child’s school to get the medical and learning accommodations your child may need. Common areas we address include:

• Individual Education Plan (IEP) or 504 plan – Plans developed through school districts to provide students who have identified disabilities or certain medical diagnoses protection under the law. These plans allow for specialized education or accommodations to help each child reach their educational goals. A child’s IEP or 504 plan includes both their academic and medical needs.
• Seizure Action Plan (SAP) – A formal medical safety plan identified by parents and their child’s medical team that provides standardized, clear direction for schools to identify and safely manage or treat seizures when they occur in school.
• School-based or neuropsychological testing – Comprehensive tests used to determine if any supportive services (such as an IEP or 504 Plan) would help a child. Advocacy involves empowering and supporting parents as they work for their child’s unique needs in school. Social workers can guide parents as they navigate the school system and communicate directly with the schools or refer to advocates when appropriate.
• Early Intervention (EI) – A system of coordinated services that promotes the child’s age- appropriate growth and development and supports families during the critical early years between birth and age 3.
• College – Epilepsy and other needs present unique challenges for college-bound young adults. Registering with college health services and disability office is a good start. There are also several epilepsy scholarship funds.

Children who have epilepsy frequently face mental health and behavioral challenges such as anxiety, depression, and attention-deficit hyperactivity disorder (ADHD); they may also have autism spectrum disorder. Living with a chronic illness can intensify these conditions, making additional support highly beneficial.

Our team can help you connect with various resources, including:

• Outpatient or in-home mental health services, including individual and family counseling
• Medication management to help manage mental health symptoms
• Medical Coping Clinic, which is part of our Outpatient Psychiatry Program
• Psychiatry Consultation Service
• School-based services
• Behavioral Response Team, for children with unique behavioral and developmental needs who have difficulty with appointments and admissions

Caring for a child with epilepsy can be expensive. It may be hard to pay for doctor visits, medication, and even everyday expenses, especially if you miss work to care for your child. Our team you connect with various supportive resources, including:

• Medicaid — supplemental insurance through the Medicaid program may be an option for children with epilepsy and other complex medical needs.
• Supplemental Security Income (SSI)
• Catastrophic Illness Fund
• Financial Counseling Center
• Family and Medical Leave (FMLA)

We’re committed to supporting children with epilepsy, rare diseases, and intellectual disabilities, as well as their families. We can help you find legal advocates who can aid in obtaining health care coverage, immigration support, access to suitable housing, and educational services. The following organizations may also be able to help:

• Epilepsy Foundation
• Disability Law Center of Massachusetts
• Federation for Children with Special Needs
• Massachusetts Advocates for Children

Many special education and community-based programs offer summer programs for children with disabilities or complex medical needs. Boston Children’s offers scholarships on a limited basis to qualifying families to assist with tuition f. Ask a member of your care team if you’d like more information.

• Epilepsy Foundation Camp
• Make-a-Wish
• Team Impact

• Epilepsy Foundation of New England provides families with resources, education and support.
• Tyler Foundation serves families in need of one-time financial assistance due to the hospitalization or medical needs of their child.
• Easter Seals provides supportive, educational and therapeutic services to children and adults with disabilities.
• The Shannon Foundation is a non-profit organization dedicated to helping families with limited finances pay for medical care for children.
• The Dravet Syndrome Foundation is dedicated to raising awareness of this rare type of epilepsy.
• The GLUT1 Deficiency Foundation is dedicated to helping families and raising awareness of GLUT1 Deficiency.
• The Hemispherctomy Foundation is for children who have had hemispherctomy brain surgery and their families.