By Samuel Roiko, Clinical Scientist
As a regional leader in pediatric epilepsy management, Gillette Children’s Specialty Healthcare treats patients who have some of the most complex, and chronic, seizure disorders seen in children. We offer our patients state-of-the-art treatments and services to help them achieve the best possible health, independence, and happiness. Part of that commitment also includes research into things like SUDEP (Sudden Unexpected Death in Epilepsy).
As its name implies, SUDEP is a sudden, unexpected, non-traumatic death in a patient with epilepsy – without evidence of a structural or toxicological cause of death. The SUDEP rate is estimated to be 1.22 out of 1000 patients with epilepsy, but there are many factors that increase the risk of SUDEP. For example, the presence of an underlying central nervous system (CNS) disease, the age of the patient, and the age of onset of epilepsy all increase the risk for SUDEP.
At Gillette, we believe that every child lost to SUDEP is one too many. That’s why we were excited to participate in the 2014 PAME (Partners Against Mortality in Epilepsy) conference, held this June in Minneapolis (pictured above). The goals of the conference were to foster knowledge, improve awareness, and hasten action around SUDEP. It was the second meeting of its kind, where clinical, basic science, and patient/family attendees came together to understand and support each other.
As clinical scientist for Gillette’s Center for Pediatric Neurosciences, I hoped to learn more about the state of the medical and research community regarding SUDEP. How SUDEP happens is not known. The brain, heart, and lungs all form an intricate, intertwined network, and increased activity in certain areas of the brain can result in a lower rate of breathing, which can lower the heart rate, resulting in a spiraling loss of function. It is difficult to precisely determine what is the primary cause.
Many presentations gave hope with new advances. Serotonin and adenosine are two of many brain neurotransmitters in the brain that have been studied. Serotonin plays a role in heart rate and respiration, while adenosine is involved in wakefulness and arousal. Selective Serotonin reuptake inhibitors (SSRIs), commonly prescribed drugs, are a potential therapeutic to prevent SUDEP. Adenosine activity increases in mouse models of SUDEP, and can be blocked by caffeine. These intriguing findings raised many questions – more indication that further research is needed.
My colleague, Beverly Wical, M.D. emphasized the importance of increasing the awareness of SUDEP, and that we at Gillette are involved in research studies regarding SUDEP. We are actively working with colleagues across the country to form a national consortium to study SUDEP and its prevention. We owe it to our patients!