If you haven't had a conversation with your healthcare team about SUDEP, ask about the risk level for your child. You may be trying to access this site from a secured browser on the server. Please enable scripts and reload this page. Turn on more accessible mode. Turn off more accessible mode. Skip Ribbon Commands.
Skip to main content. Turn off Animations. Turn on Animations. Our Sponsors Log in Register. Log in Register. Ages and Stages. Healthy Living. Safety and Prevention. Family Life. Health Issues. Tips and Tools. Our Mission. Find a Pediatrician. Text Size. Page Content. 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.
The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances. Cameron Boyce's death was 'sudden' and 'unexpected,' coroner says.
Doctors call these deaths SUDEP for short, and most occur during or after seizures, which can cause people to stop breathing and can trigger dangerous irregular heart rhythms. An estimated 3. The condition "actually takes more lives every year than sudden infant death syndrome does," said French, "but obviously it doesn't get the same press.
Cameron Boyce's death shines a light on fatal stigma. Read More. The term doesn't include deaths related to external causes, such as drowning or crashing a car during a seizure. Only recently have doctors begun to truly understand the phenomenon, French said, and more doctors discuss the risk with patients now than in years past. First, because the families need to know, and second, because there are things people with epilepsy can do to reduce their risk.
What is epilepsy? Here's what you need to know about the seizure-causing spectrum of disorders. Because the deaths are often connected to seizures, the most important thing patients can do to reduce their risk is take seizure medication as prescribed, according to the CDC.
It is at least the sixth leading neurologic cause of death but the second largest in lost years of potential life, following only strokes.
Taken together, that data shows that people are killed by SUDEP at a far younger age than most other neurologic causes of death. And the consequences are that no one knows the actual death rate for sure. In his article, Dr. Devinsky describes how two small research projects on SUDEP mortality presented results with a fold difference in findings.
The reason? One study, from Finland, relied on clinical records and detailed investigations of the cases; the other, from Ohio, used findings in death certificates. Medical examiners, unfamiliar with the sudden stoppage of life that can happen with epilepsy, rarely use SUDEP as a cause of death.
For example, a year-old man with generalized seizures since age 12 died in his sleep, which is common with SUDEP. The medical examiner found mild coronary artery thickening and used coronary disease as the cause of death. Epilepsy was not even mentioned on the death certificate. The same thing often happens when people develop pneumonia after involuntarily inhaling material in their mouths during a seizure and subsequently die. The epilepsy is rarely cited as even a contributing factor in death; pneumonia is cited instead.
Making all of this dramatically worse is the neurologists and epileptologists who — out of arrogance, ignorance, or fear — refuse to tell all of their patients about the risks of death in epilepsy. For some reason, pediatric oncologists are able to talk about mortality even with little children, but epilepsy specialists do not even uniformly tell adults of the risk.
Just 26 percent tell the majority of their patients, 61 percent inform a few, and 7. And even with those pathetic results, the doctors who told their patients said that most of the time, it was only because the patients had asked about SUDEP. While no studies have been conducted to determine how many neurologists tell those with epilepsy about all of the risks of death associated with the disease, the numbers are certainly smaller.
Not only did I have no idea SUDEP existed until recently but doctors and officials at the Epilepsy Foundation have told me in recent weeks that I likely survived this potential killer. After experiencing a convulsion many years ago, I stopped breathing while still unconscious. I made no sounds to suggest there was a problem, but someone noticed I was turning blue.
After being alerted, another person shook me aggressively and then slapped me hard a couple of times. I resumed breathing. Whether to tell a patient of this risk is literally a life-and-death choice made by the doctor, often with no input from the patient. If those of us with epilepsy know the risks, we can take precautions that we otherwise might not.
Devices can alert family members and caregivers that a seizure is occurring so they may administer rescue medication, roll the person on his or her side, or stimulate the person to improve respiration and arousal after a seizure.
We must inform patients and families about the risk of death. Russell experienced eight seizures in seven years. Doctors considered him controlled.
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