Advice for parents and caregivers: Managing transition of care for children with severe epilepsy

(BPT) - Epilepsy is the nation’s fourth most common neurological disorder, yet public understanding of it is limited – so much so that federal agencies and nonprofit organizations recently asked the Institute of Medicine (IOM) to study and report on the public health needs of people living with epilepsy. The recommendations the IOM put forth in the report, Epilepsy Across the Spectrum: Promoting Health and Understanding, include a call for expanding educational opportunities and resources.

Lennox-Gastaut Syndrome (LGS) is a type of epilepsy that usually appears before the age of 8 and accounts for up to 4 percent of all childhood epilepsy cases. It is characterized by multiple seizure types and impairment of cognitive function and presents caregivers with unique challenges.

LivingwithLGS.com, a website made possible through the support of Eisai Inc., aims to provide educational resources, such as those called for in the IOM report. “Transitions of Care,” a new educational video for caregivers of patients with LGS, recently launched on LivingwithLGS.com.

The video features Dr. E. Steve Roach, professor and chief of the Division of Child Neurology, Nationwide Children’s Hospital and Ohio State University and former president of the Child Neurology Society (CNS), and Sam Warren, a parent and caregiver of a child living with LGS. The video provides tips for caregivers about how to navigate the transition of care from childhood to adulthood. In addition, Christina SanInocencio, president of the LGS Foundation, provides additional commentary.

Because LGS is a life-long condition, transition of care is not a single event, but a process, and families should start planning early to ensure everyone involved in their child’s care communicates openly about their evolving needs. It is important for families to coordinate transition of care with their child’s pediatric neurologist, the child and an adult neurologist – long before the child turns 18. The video explores the need to look to the future, assembling a team that can care for an adult with LGS, identifying residential living opportunities, managing finances and establishing guardianship.

While a young adult with LGS may not be ready to live alone or be responsible for his or her own care, legally he or she becomes an adult at 18. It is important for families to understand what a child’s needs are likely to be in adulthood and prepare to meet those needs while they are still young. For additional educational videos, tip sheets and LGS resources, visit www.LivingwithLGS.com.