AAP Voices Blog

When I met Katie,* she was 16 years old. She had a diagnosis of “absence epilepsy” and had been on ethosuximide for two years. Because of her seizures, she could not drive, and her diagnosis of epilepsy overshadowed much of her social and academic life.

Katie lives about four hours away from the closest neurologist. She had undergone several tests, including an EEG that was normal. However, she continued to have intermittent spells, consisting of staring that would happen randomly throughout the day. I met her as part of a study financed by the Health Resources and Services Administration designed to create medical homes for children with epilepsy living in underserved rural areas. This is a collaborative study with the American Academy of Pediatrics.

According to a study conducted in 2005, there are just over 900 child neurologists in the United States and most of these tend to reside in large urban areas. Yet, according to the CDC there are 470,000 children with epilepsy in the U.S. In Kansas and Missouri alone (I live and practice in Kansas City, at the junction of these two states), there are more than 1,200 children with epilepsy.

For many of them, traveling to the nearest epilepsy center involves up to a six-hour drive one way. As a result, many of these children get inadequate or no care at all for their epilepsy.

Case in point, Katie’s staring spells were just that, staring spells, not seizures. It can be difficult to differentiate between absence seizures and simple inattention. But to do so can change a child’s life. Katie was able to be weaned off her anti-epileptic medications, she went back to driving, and she resumed a normal teenage life. I have continued to see her intermittently since and she could not be happier.

REACT (Reaching Out for Epilepsy in Adolescents and Children Through Telemedicine) was developed with the help of HRSA and the AAP. It is designed to address six essential core components of living with epilepsy:

• Easy access to care through telemedicine
• Better communications between primary care physicians and epileptologists
• Enhancing the knowledge of primary care physicians in the treatment of epilepsy
• Increasing community engagement in the management of children with epilepsy
• Addressing the psychological burden of having epilepsy or/and having a family member with epilepsy
• Preparing and facilitating transition to adult care

“It is clear that children with epilepsy need to have a medical home close to where they live that will comprehensively address their care.”

It is clear that children with epilepsy need to have a medical home close to where they live that will comprehensively address their care. Given the low number of child neurologists in the U.S., a factor aggravated by the concentration of these practicians in large metropolitan centers, it was essential to find a solution.

The initiative launched by HRSA, Transforming Health Care for Children and Youth with Epilepsy, allowed us to develop REACT for the children of Kansas. As a result of this initiative, tools are being developed across the U.S. designed to help children with epilepsy and their families.

One such tool is the development of short videos in English and Spanish on YouTube that we created for patients and their families. Similar tools are being developed in many other states as a result the initiative launched by HRSA and supported by the AAP. November is National Epilepsy Awareness Month and I invite you to learn more about REACT and the work we’re doing.

When children and teens with epilepsy can’t come to a neurologist’s or epileptologist’s office, specialists can come to patients through telemedicine and also can work with pediatricians to offer comprehensive care.

While much remains to be done, this initiative is a milestone in improving the care of children with epilepsy.

*Not her real name. Other details have been changed to protect her identity.