Our goal at the Boston Children’s Hospital Epilepsy Center is to treat your whole child and provide support and guidance to your family. We are here to offer support in navigating the complex world of epilepsy.
Children with epilepsy are at greater risk for learning problems and a large number of intellectually disabled children have seizures. Specific accommodations for learning as well as managing seizures and general safety in the classroom are important considerations.
Our team can help you work with school personnel to get the medical and learning accommodations your child needs. Here are some common terms and topics we might discuss with you:
- Individual Education Plan (IEP) or 504 Plan – These are plans developed through the 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 reaching his or her educational goals. Both educational and medical needs are typically included in a child’s IEP or 504 Plan.
- 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 – These comprehensive tests are used to determine if any supportive services (such as an IEP or 504 Plan) would help a child.
- Advocacy – This involves empowering and supporting parents as they work for their child’s unique needs in school. Social workers can provide guidance to parents as they navigate the school system and can communicate directly with the schools or refer to advocates when appropriate.
- Early Intervention (EI) – This is 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 a number of epilepsy scholarship funds.
Mental health support
Children with epilepsy have a higher rate of mental health and behavioral issues, including depression, anxiety and attention-deficit hyperactivity disorder (ADHD). They may also have social skills disorders like autism spectrum disorder. The stresses of having a chronic condition can add to these problems. For these reasons, children with epilepsy may benefit from extra support.
Speak with your provider about any behavioral or mental health concerns. Your team can help you connect with many types of 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
There are many financial implications of managing a special health need like epilepsy. Missed work, medical expenses and insurance costs can be a strain on parents and families. It is important to explore all available insurance and financial support options. Our team can help you navigate the following resources:
- 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
The Epilepsy Center is committed to supporting people with epilepsy, rare diseases and intellectual disabilities. We can help families who are struggling find legal advocates to assist in getting appropriate health care coverage, immigration support, access to adequate housing or educational services. The following organization may also be able to provide help:
- Epilepsy Foundation
- Disability Law Center of Massachusetts
- Federation for Children with Special Needs
- Massachusetts Advocates for Children
Programs and camps
Many special education programs and community-based programs offer summer programs for children with disabilities or with medical needs. Boston Children’s offers scholarship money on a limited basis to qualifying families to assist with tuition for summer camps. Ask your social worker if you’d like more information.
- 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.
Watch: Educational resources
Admission for recording of events
Getting an EEG
Getting an EEG (for kids)
Phase 1/pre-surgical evaluation