Parents of children with epilepsy and mental health problems have a new go-to resource.
Researchers from Case Western Reserve University and Cleveland Clinic have created "What you should know about mental health in youth with epilepsy," an information booklet and CD that answers questions about children's medical and psychological issues.
About 2 million Americans, or roughly one percent of the population, have epilepsy, according to The Epilepsy Foundation. It also reports that mental health issues, including depression, affect about 30 percent of children with epilepsy. Depression contributes to suicide, which is higher among adolescents with epilepsy than the general teen populations.
So many parents naturally wonder what can be done to help their children.
Drawing from their experiences with families and children with epilepsy, Jane Timmons-Mitchell, PhD, from the Begun Center for Violence Prevention Research and Education at the Jack, Joseph and Morton Mandel School of Applied Social Sciences, and Tatiana Falcone, MD, an assistant professor of medicine in the Child and Adolescent Psychiatrist Epilepsy Center at Cleveland Clinic, created the guide.
The information includes sections on child development, epilepsy and mental health, treatment and interventions and medical resources.
Timmons-Mitchell, a clinical psychologist, said that, as children go through different developmental stages, parents need information to understand the changes their children might experience.
The tool kit provides basic information, with links to reliable online resources about child development, medications for epilepsy and mood disorders, how to navigate a school system for support, and marshaling community resources.
Both researchers have helped families cope with the emotional impact epilepsy and the resulting seizures have on children, such as bullying for being different.
"It's particularly hard for the child who has an epileptic seizure in front of classmates," said Timmons-Mitchell, a senior research associate in the social work school.
Much of Timmons-Mitchell's research is focused on how bullying impacts disabled children. She hopes the guide will teach parents how to partner with schools to provide for the child's needs and prevent situations that could lead to bullying.
Work to create this new aid for parents was supported by a three-year grant from the federal-funded Health Resources and Services Administration's Project COPE (#H98MC20269 from HRSA). Falcone is the lead investigator on the project; Timmons-Mitchell as a co-investigator.
About 5,000 copies of "What you should know about mental health in youth with epilepsy" are being distributed by the Epilepsy Foundation to local affiliates, doctors specializing in care for young patients with epilepsy, and others requesting a copy.