Among those who have lost a loved one to Sudden Unexpected Death in Epilepsy – or SUDEP – too many share a common experience: they had never heard about the risk that their child could die from the disease.
A tragic example is the story of Danny Stanton (see, “What Danny Did, and Still Does,” below). His mom and dad only learned about the term “SUDEP” from his death certificate.
What is SUDEP?
SUDEP refers to deaths in people with epilepsy that are not caused by injury or drowning, for example, or other known causes. Many cases of SUDEP are believed to occur during or immediately after a seizure. Studies show that about 1 in 1,000 people with epilepsy die suddenly. Among those whose seizures are not controlled by medication, that rate increases to 1 in 150.
Risk factors for SUDEP
Danny’s parents established the Danny Did Foundation in 2010, with the purpose of keeping people alive until the ultimate solution – a cure for epilepsy – is achieved. People with lack of seizure control are at greatest risk for SUDEP. The foundation tries to raise awareness of the risk factors, such as:
- Having convulsive seizures, also called tonic-clonic or grand mal seizures
- Seizures that happen during sleep, also called nocturnal seizures
- Missing seizure medications. Not taking medication as prescribed can lead to more seizures, which raises risk.
How to minimize SUDEP risk
While there is no cure to prevent SUDEP, there are steps that patients with epilepsy and their families can take to minimize the risk as much as possible. Strategies include:
- Striving for maximum seizure control by closely following treatment plans
- Regular exercise, and lifestyle habits that reduce stress and seizure activity
- Regular doctor visits, especially if convulsive seizures are not controlled
- Monitoring for seizure activity specifically during sleep hours
- Considering options such as epilepsy surgery, or dietary therapy
- Talking with your doctor about a cardiac evaluation, to rule out heart problems
- Ensuring that family members and caretakers know seizure first aid and emergency resuscitation measures, including CPR and defibrillator use
Seizure alerts & safety checks
The best way to prevent SUDEP is to prevent seizures. Short of that, having another person present during or right after a seizure is a huge plus for safety. Most SUDEPs occur when a person is alone. However, there are technologies and devices that can alert family members and caregivers when a seizure happens, so they can do a well-being check. A growing number of alerting systems exist, but awareness of them remains low and insurance coverage is rare–even for the few among them that have FDA approval.
Caregivers can explore alerting devices as an added safety measure within a treatment plan. The Danny Did Foundation provides counseling for parents on how to select a device, as well as grant funding for families who need financial support to access a device.
| What Danny Did, and Still DoesBy Mike Stanton|
My son, Danny, died of SUDEP after a nighttime seizure when he was 4 years old. My wife and I feel the best way to honor the life of Danny is to redouble our efforts to prevent this tragedy from happening to others. In 2010, we established the Danny Did Foundation.The Danny Did Foundation works with the American Academy of Pediatrics to serve as a resource for questions and support. We collaborate with fellow advocates, healthcare providers and most of all, families, to educate and make positive change within the epilepsy community.Danny remains at the heart of the foundation’s efforts, and our family. I talk to Danny every day. I ask him how he’s doing, I care for him and I enfold his presence into mine: we remain parts of the same circle.The years since Danny’s death have sculpted a new relationship between us. What at the beginning was complicated has smoothed out into welcome routine. As with any relationship, there are emotions: happiness and sadness, and there is too a dual longing for what was. Regardless, ours is a parent-child relationship, and so —undeterred by the logistics— we still share adventurous eyes toward the future. He is my son, and I am his dad.Danny Did Foundation takes its name from the last line of Danny’s obituary. “Please go and enjoy your life. Danny did.” We celebrate Danny’s spirit in every child and family we reach.
Communication is key
Like so many parents, Danny’s mom and dad believed they had the best possible treatment plan in place. Yet, 10 years later, awareness of epilepsy’s mortality risk remains stubbornly low. Mortality rates for people with epilepsy are up to three times higher than the general population, and caregivers in our community deserve and need to be informed. If you haven’t had a conversation with your healthcare team about SUDEP, ask about the risk level for your child.