July 10, 2019 — Disney Channel star Cameron Boyce died from a seizure Saturday at age 20. On Tuesday, his family released a statement that the actor had been treated for epilepsy, ABC News reports.
“Cameron’s tragic passing was due to a seizure as a result of an ongoing medical condition, and that condition was epilepsy,” the statement said. “We are still trying to navigate our way through this extremely heart wrenching time, and continue to ask for privacy so that the family, and all who knew and loved him, can grieve his loss and make arrangements for his funeral — which in and of itself, is agonizing.”
Epilepsy is a common neurological disorder, the hallmark of which is unprovoked seizures. It affects people of all ages, though it’s more common among young children and older people. Death from epilepsy is rare. The leading cause of death among people with uncontrolled epilepsy, sudden unexpected death in epilepsy, or SUDEP, kills 1 in 1,000 people who have the disorder.
Scientists don’t know the exact cause of SUDEP. The victim is often found in bed, lying facedown. It may not be clear that the person has had a seizure — there are signs, or a witness, only about one-third of the time. But researchers have identified possible factors:
- Breathing problems: During a seizure, a person may have pauses in breathing, which can become life-threatening if they go on too long. Or a convulsive seizure may lead to an obstructed airway, which leads to suffocation.
- Heart rhythm: Rarely, a seizure may cause a dangerous heart rhythm or cardiac arrest.
- Mixed causes: SUDEP may happen when breathing problems and an abnormal heart rhythm coincide, or from other, undiscovered causes.
One thing experts do know: SUDEP is most common in people who have uncontrolled epilepsy. People who have three or more convulsive seizures per year (what most of us picture when we think of a seizure) are 15 times more likely to die of SUDEP. Other things that can make it more likely are:
- Missed doses of medication, or not taking medication as prescribed
- Stopping or changing medication suddenly
- Being between the ages of 20 and 40
- Having an intellectual disability, with an IQ under 70
If you have epilepsy, controlling the number of seizures you have will cut your risk of SUDEP:
- Always take your seizure medication as prescribed.
- If you’re still having seizures, speak with your medical team.
If you’re aware of any seizure triggers, take care to avoid them.
CHICAGO — Epilepsy kills up to 50,000 people each year, grim statistics Mike and Mariann Stanton hadn’t heard of until their 4-year-old son, Danny, became one of the victims.
That tragedy a year ago transformed a blissfully ordinary Chicago family into extraordinary activists. Fueled by grief, the Stantons’ advocacy has brought widespread attention to a rare, little-understood medical condition, Sudden Unexplained Death in Epilepsy, or SUDEP.
The Stantons want other families to know what they’d never been told: Epileptic seizures can be deadly.
They’ve put up billboards, created more than 8,000 informational SUDEP brochures for doctors’ offices, hospitals and families; held fundraisers to boost awareness and research dollars; and created a foundation that has more than 10,000 Facebook followers. But their biggest coup is getting researchers at three major medical institutions in Chicago to launch the first rigorous study of a monitoring device for detecting dangerous seizures during sleep.
The study is scheduled to start early next year. Even if it shows the device doesn’t work, Mike Stanton says their work won’t be done until epileptic seizures can be wiped out.
Dr. Doug Nordli of Children’s Memorial Hospital, who agreed to participate, called it “extraordinary” that a major study would be prompted by a family’s advocacy.
“You put yourself in the position of a parent who has lost a child, and I think you’re naturally sympathetic and want to help in whatever way you can,” Nordli said.
Before Danny’s death, the Stantons were a family that inspired admiration and envy, with four children, dozens of devoted relatives and friends, and lives punctuated by kickball games, pizza with neighbors and other kid-oriented activities.
When Danny died in his sleep from a seizure two weeks before Christmas, their lives could have been shattered. Danny, their second-youngest, was an irrepressible boy known throughout their close-knit neighborhood for his exuberant zest for life.
In January, the Stantons created the Danny Did Foundation, after the final words Mike Stanton wrote in Danny’s death notice: “Please go and enjoy your life. Danny did.” Mike’s younger brother, Tom Stanton, who has a background in public relations and volunteer work, serves as the nonprofit’s executive director.
Both 40, these parents seem in awe of what they have created.
“Sometimes, I step back and I look at what we’ve done in 11 months with this,” said Mike Stanton, an investigator for the Cook County State’s Attorney’s Office. “What is it about this little boy that has created this enormous presence? He definitely keeps giving.”
Most at risk
More than 3 million Americans have epilepsy, recurrent seizures caused by electrical disturbances in the brain. About 40 percent have seizures hard to control with medicine. They face the highest SUDEP risk, although anyone with epilepsy is at risk.
SUDEP claims a reported 3,000 lives each year nationwide, but the toll is likely higher, said Dr. Elson So, a Mayo Clinic neurologist and leading SUDEP expert. He learned about the upcoming research on a seizure detector from Chicago colleagues and has offered to take part.
“Even if the impact of this device on the SUDEP risk is small, there should be other advantages from a device that detects seizures, in terms of knowing how frequently a patient is having seizures and also preventing injuries, if not death,” So said.
The Stantons learned about the device, used in Europe, after Danny died. It’s designed to sound an alarm if seizures are detected during sleep. That theoretically would give parents time to reposition their child to prevent choking, administer medicine and get help.
Made by Emfit of Finland, it features a plastic sensor sheet placed under a mattress, and a bedside monitor that together are designed to detect unusual movement that could indicate a seizure.
The $600 device is not approved by the U.S. Food and Drug Administration (FDA), but the Stantons initially wanted doctors to recommend it anyway, based on anecdotal reports that it works.
With help from the local Epilepsy Foundation chapter, they contacted several epilepsy experts, including Dr. Marvin Rossi, a neurologist at Rush University Medical Center. He was hesitant but found the Stantons knowledgeable and committed — and they understood his skepticism.
“You may as well be promoting snake oil until we understand it better,” Rossi said. “What the Danny Did Foundation clearly helped me see is that there’s such a huge gap in the field that it’s worth setting up an initiative like this.”
With some of the nearly $300,000 they’ve raised, the Stantons bought and distributed Emfit monitors to more than 20 families unable to afford them. Emfit gives the foundation $60 when people ordering monitors mention the Stantons; the money goes into foundation operations, Mike Stanton said.
Danny Stanton had only a handful of seizures, at night and always terrifying. For a long time, his parents had him sleep in their bed. They gave him recommended medicine, had him undergo brain-wave tests, and were told he’d likely outgrow the problem.
Whether families of epilepsy patients should be told about SUDEP is a topic of “huge discussion” among doctors, said Dr. Stephan Schuele, a Northwestern University who also is participating in the research.
The reason some don’t mention SUDEP is that it’s rare, and patients with well-controlled seizures are thought to face little risk. Also, Scheule noted, some people would prefer not to know every worst-case scenario.
Stanton knows his son might have died even with a monitor. But he thinks he could have done so much more if he’d known death was a possibility, and that overwhelming sense of powerlessness eats away at him.
“We didn’t know what we were facing,” Stanton said in a tearful speech last month at an Epilepsy Foundation of Chicago meeting. “That is difficult to accept, and it is maddening.”
- Epilepsy and Movement Disorders Program
- Sudden Unexpected Death in Epilepsy (SUDEP)
- The Fatal Four in IDD: What You Need to Know About Seizures
- Why are Seizures One of the IDD Fatal Four?
- Risk Factors for Seizures
- Complications from Seizures
- Signs of Seizures
- Responding to Seizures
- 10 Ways DSPs Can Prevent Seizures or Related Injuries
- What are the main causes of epilepsy?
- What happens during a seizure?
- What can I do help someone who is having a seizure?
- Medical Expert on Jett Travolta: Seizures Can Kill
- Can Laughing Too Hard Kill You?
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Sudden Unexpected Death in Epilepsy (SUDEP)
Other possible steps to reduce the risk of SUDEP may include
- Avoid seizure triggers, if these are known.2 Read more information about seizure triggersExternal on the Epilepsy Foundation website.
- Avoid drinking too much alcohol.1
- Learn how to better control your seizures with epilepsy self-management programs.
- Get enough sleep.1
- Train adults in the house in seizure first aid.
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How do I talk to my healthcare provider about SUDEP?
When you decide to talk with your healthcare provider about SUDEP, you may want to ask
- What is my risk for SUDEP?
- What can I do to reduce my risk?
- What should I do if I forget to take my anti-seizure drug?
- Should we consider changing my current seizure medicine to better control my seizures?
- If we decide to make a medicine change, what medicine(s) might provide better seizure control for me?
- Are there any specific activities I should avoid?
- What instructions should I give my family and friends if I have a seizure?
- Who can my family and I contact locally to receive information and training in seizure first aid?
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SUDEP in Children
Children with uncontrolled epilepsy or frequent seizures are at the highest risk for SUDEP.
Read SUDEP information for parents of children with epilepsy.
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More about SUDEP
Visit the Epilepsy Foundation’s SUDEPExternal page for more information and resources.
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The Fatal Four in IDD: What You Need to Know About Seizures
How do you help a person with an intellectual disability achieve a higher quality of life?
Providing support, companionship, and dedicated, compassionate care can go a long way, but the Fatal Four can destroy any foundation you work to build. Dehydration, constipation, aspiration and seizures make up the Fatal Four. These conditions have the potential to severely impact a person’s quality of life and, in some cases, can be deadly.
Why are Seizures One of the IDD Fatal Four?
A seizure is an event in which a person’s brain experiences a surge or “storm” of electrical activity, which interrupts the brain’s typical functioning. About 1 in 10 people will experience a seizure at some point in their life, and many of those seizures do not recur. However, some people experience multiple seizures and are diagnosed with a seizure disorder.
Seizure disorder, also called epilepsy, is a developmental disability. Like autism and cerebral palsy, many individuals with epilepsy have typical IQs and live highly independent lives. However, there are many individuals with IDD who have epilepsy in addition to another disability. As many as 35 percent of individuals with cerebral palsy and 75 percent of individuals who have experienced brain injuries may also have a seizure disorder.
Seizures can be dangerous in the moment they occur, because the individual experiencing them often loses control of their body, loses consciousness, or both. This can result in a variety of injuries, accidents, and dangerous situations: imagine what would happen if a person suddenly lost consciousness while swimming, driving, or crossing a busy street.
The accumulated effects of seizures over a lifespan can also be deadly. Individuals whose seizure disorder is not well-controlled may experience severe complications, including death.
Risk Factors for Seizures
Individuals who have a known seizure disorder may have seizures at any time for no apparent reason. However, some circumstances might provoke a seizure even in a person who does not have epilepsy. These include:
- Brain injury
- Brain infections
- Liver or kidney failure
- Severe high blood pressure
- High fever (typically in children)
- Drug use or toxic substances
For individuals who do have epilepsy, anything that causes stress to their brain or body systems could increase the risk of a seizure. Further, some individuals have specific “triggers” for seizures. Classic examples include flashing lights or certain sounds.
Complications from Seizures
The most common immediate dangers of seizures are not from the seizures themselves. Seizures can result in falls, drowning, or other injuries, and a person who vomits during a seizure can choke on or aspirate their vomit. However, there may be other serious complications due to a seizure or ongoing seizure disorder:
- Emotional distress. Individuals coping with epilepsy are at a greater risk of depression and other psychological disorders due to the fear and uncertainty that seizures often cause.
- Cognitive decline. Individuals who experience many seizures over a long period of time may experience gradual memory loss and other cognitive decline.
- Status epilepticus. This occurs when a seizure or series of seizures continues indefinitely without the person recovering in between. Very long seizures can be dangerous and require medication to resolve.
- Sudden unexpected death in epilepsy. SUDEP occurs in one-tenth of a percent of people with epilepsy, and it is not fully understood. SUDEP typically occurs during or immediately after a seizure.
In general, seizures that last longer than 5 minutes are considered a medical emergency. A series of seizures is also considered an emergency. These situations can result in permanent injury or death.
Note that aspiration, another of the Fatal Four conditions, is a possible complication from seizures.
Signs of Seizures
There are many different types of seizures. Seizures don’t always involve full-body convulsions; in fact, seizures that impact only part of the brain or body are more common. Here are some examples of possible signs of a seizure:
- Tremors or “shaking”
- Loss of control over parts of the body
- Unusual eye movements
- Sensory abnormalities
- Appearing “absent” or staring
- A scream or cry
- Loss of consciousness
- Disorientation or confusion
Seizures are very individualized, and there are many more signs than can be listed here. People who experience repeat seizures typically develop a pattern of seizure that is typical for them. However, seizures can still occur unpredictably even for people with an established pattern.
Responding to Seizures
Since there are so many types and causes for seizures, there is no one-size-fits-all response to a seizure. In general, you should consider these actions:
- Monitor for environmental risks. Be alert to the potential for falls, for colliding with furniture or other items, for walking into traffic, or any other hazards in the environment. Do what you can to prevent injury.
- Prevent choking or aspiration. Some individuals may vomit while seizing, which puts them at risk of aspiration or choking. If possible, help the person turn onto their side or in a recovery position. Don’t put anything into the mouth of a person who is seizing.
- Do not restrain them. Restraining or holding a person down can cause injury, and in their disoriented state they may struggle.
- Prepare to report. Pay attention to the details of the seizure, including what was happening before, if you noticed any initial warning signs, how the person behaved while seizing, the time it started, and how long it lasts. You will document this later, and if the person needs medical support you will share it with the emergency responders.
- Support the aftermath. People who are coming out of seizures may not act like themselves. They may be disoriented, frightened, tired, or weak. Avoid offering food or beverage, or asking the person to do anything physically taxing, in the immediate aftermath of a seizure. Stay with them until you are sure they are fully awake.
- Get help if you need it. Contact emergency medical services (call 911) if indicated on the person’s plan, or if you have any concerns about the course of their seizure. Anyone who is not breathing, who is pregnant, who sustains a significant injury due to a fall or other hazard, or who has never had a seizure before should receive immediate medical assistance.
Many individuals who experience repeated seizures will have a personalized seizure plan or protocol written by their doctor. They may require specific intervention, such as using a medication to stop their seizure or calling 911 if certain conditions are met. Be sure to follow this plan carefully and notify the person’s medical team of any changes or concerns.
10 Ways DSPs Can Prevent Seizures or Related Injuries
Seizures aren’t always preventable, but direct support professionals (DSPs) can play an important role in helping the people they support to reduce their risk of seizures or related injuries.
1) Provide medication support
Anticonvulsant medications can substantially lower a person’s risk of having a seizure. Help the individuals you serve take their medications on time and as prescribed by their doctor.
2) Avoid known seizure triggers
This can vary tremendously from person to person. Some individuals have seizures triggered by specific songs, by flashing lights, or by monthly hormonal fluctuations. Some individuals have no known triggers. Drugs and alcohol are common triggers.
3) Know their warning signs
Some individuals have specific warning signs prior to a seizure. They may feel dizzy, lose sensation in part of their body, or have other unique indicators that a seizure is imminent. Recognizing these signs can create an opportunity to lie down, move away from hazards, or call for help if needed.
4) Recommend showers
It takes very little water to drown, so a seizure while in the bath can be fatal. Encourage individuals at risk for seizures to take showers instead, and consider the use of a shower chair to reduce the risk of slipping and falling if a seizure occurs.
5) Beware the heat
Intense heat can increase dehydration, another of the Fatal Four conditions. Dehydration is a risk factor for seizures.
6) Support sleep hygiene
Not getting enough sleep can increase a person’s risk of seizures.
7) Treat fevers
Illnesses, particularly high fevers, can sometimes trigger seizures, particularly in individuals with a known seizure disorder.
8) Help manage stress
High levels of stress can trigger seizures in some individuals. Stress can also trigger other risk factors, such as dehydration due to forgetting to drink fluids or not getting enough sleep.
9) Recognize situational hazards
Although individuals with seizure disorders can often participate in a wide array of typical activities, be aware of which activities pose special risk for the individual you support. Stairs, for example, can be dangerous for someone who typically falls when they seize and who has no prior warning of an oncoming seizure.
10) Document all seizures
Even if a seizure seems minor, it is important to keep a record of it. The individual’s medical team can learn valuable information about treatment needs by knowing facts such as the time, duration, and features of a seizure. Documenting all seizures or suspected seizures can help to identify patterns of possible triggers or warning signs.
DSPs and other caregivers need to know how seizures and the rest of the Fatal Four – dehydration, constipation, and aspiration – interact and potentially cause other serious health problems. The only way to keep the Fatal Four from claiming more lives is education and prevention.
Additional Posts About The Fatal Four
Dehydration Signs and Risk Factors
How Constipation Impacts Health
Aspiration’s Dangers and Key Interventions
“It’s like a short circuit,” Shafer said. “The brain responds to the change in behavior with a seizure.”
But it’s important to note that having a seizure doesn’t equal an epilepsy diagnosis. “They can be caused by extremely high blood sugar or extremely low blood sugar. A high fever can trigger a seizure in babies,” Shafer, who is an editor at Epilepsy.com, told TODAY. “But if a person has more than one seizure and there’s no medical cause, that’s what epilepsy is.”
What are the main causes of epilepsy?
According to the American Epilepsy Society, a neurological professional organization, 1 in 26 people will develop epilepsy or recurring seizures in their lifetime. When counting both children and adults in the U.S., about 5 million people have a history of epilepsy.
“It can occur at any age but the incidence is highest in those under the age of 5 and adults over 55,” Shafer said.
When the cause of epilepsy can be determined, the most common are a head injury, stroke, brain tumor or infection. Genetics can also play a role in developing epilepsy. With kids, there might be developmental abnormalities or scarring of the brain that triggers epilepsy. The cause is unknown for over 60% of cases.
“Researchers are trying to figure it out,” Shafer told TODAY. “Why do some people, after a head injury, develop epilepsy, but others don’t? It’s a big study.”
What happens during a seizure?
According to the Centers for Disease Control and Prevention, seizures are classified into two groups: generalized (involving the whole brain) and focal (starting in one area of the brain). Tonic-clonic seizures (formerly known as grand mal) and absence seizures are common generalized seizures. Absence seizures are typically seen in young kids. “It can look like a small staring spell,” Shafer said. “There might be some eye blinking. You might not even know someone is having one because they’re over so quickly.”
Tonic-clonic seizures are more dramatic. “Those are the ones you see on TV shows,” Shafer said. “The person loses consciousness. If they’re standing, they fall. The body gets stiff and there might be jerking of the arms and legs. They usually last about a minute or two.”
What can I do help someone who is having a seizure?
Remember these three words: Stay, safe, side. “You want to stay with person, keep them safe by moving things out of the way, and turn them on their side to keep their breathing clear,” Shafer explained. If the person is up and walking, it’s crucial to remain nearby so they don’t wander into traffic or fall down a flight of stairs.
There is no need to call for medical help if the person has known epilepsy and the seizure lasts less than five minutes. “If they recover normally, everything is OK,” Shafer said. “If a person has a seizure with loss of consciousness and they’re having two or three at a time, they need to get to the ER.” Pregnant women should also get checked out immediately.
Under no circumstances should you put an object in someone’s mouth to prevent them from swallowing their tongue. “It’s impossible to swallow your tongue,” Shafer said. “Just turn the person to their side.”
This story was updated to clarify the different types of seizures. For more information on what to do if someone is having a seizure, read here.
Medical Expert on Jett Travolta: Seizures Can Kill
The Travoltas have not spoken publicly about Jett’s medical condition since his death Friday in the Bahamas, but both had talked in the past about their son’s battle with Kawasaki disease, a rare condition that affects young children but can cause heart problems later in life.
But according to Spitz, complications from Kawasaki do not seem to be the culprit here.
“In this case, where you have a child with possibility of Kawasaki disease and a known seizure disorder, for which he allegedly got treatment, I believe that the death is the result of the seizure disorder,” says Spitz. “Death from Kawasaki is at best unusual.”
“The problem is we don’t know why this seizure is the one that killed him,” Spitz says “It could be because there was not enough medication.
“What they do with patients with seizure disorder is that they balance it from time to time to check whether the amount that is being given is correct and also whether he had been recently checked and it had been augmented or reduced needs to be looked at. Also, maybe he didn’t take the last dose of medication, or maybe the surge of power was too big and overcame the existing level of medication in his body.”
While police initially said last week that Jett hit his head on the bathtub after suffering an apparent seizure, his body showed no signs of head trauma.
“He might not have been fully unconscious and could have braced his fall with his hands stretched out,” suggested Spitz, who served as an expert witness in Phil Spector’s first murder trial last year and in O.J. Simpson’s wrongful-death case in 1997.
Official results have not yet been made public. The boy’s body was due to be cremated in the Bahamas this evening and the remains handed over to his family tomorrow. A funeral service is expected to be held Wednesday in Florida, where the Travolta family has a home.
EDITOR’S NOTE: The original version of this story included some inaccurate assertions by Spitz regarding seizures and suffocation. Those remarks have been removed.
Can Laughing Too Hard Kill You?
Laughing is one of the best medicines for a sour mood, but too much could cause one of the following life-threatening conditions:
Ruptured brain aneurysm
A brain aneurysm is a bulge that forms in a blood vessel (artery) in the brain. Some aneurysms go undiagnosed, yet a bulge can eventually rupture and cause bleeding in the brain.
A ruptured aneurysm can quickly lead to brain damage, as well as cause increased pressure in the skull cavity. This elevated pressure can interfere with the oxygen supply to the brain, sometimes resulting in coma or death.
Signs of a ruptured brain aneurysm include:
- severe, sudden headache
- double vision
- sensitivity to light
The exact cause of a brain aneurysm is unknown.
If you have an undiagnosed brain aneurysm, a hard laugh could potentially lead to rupture or leakage.
Different emotions can trigger asthma symptoms. These include crying, stress, excitement, and yes, even laughing.
Some people only experience mild asthma symptoms. In others, a hard laugh triggers a severe asthma attack, making it difficult to breathe.
Without prompt asthma treatment, a laughing-induced asthma attack can be life-threatening and cause respiratory failure or cardiac arrest.
Gelastic seizures commonly start in the hypothalamus. These seizures are unique because they’re often associated with uncontrollable laughing or giggling while awake or asleep.
The person having the seizure may appear to laugh, smile, or smirk. These emotional expressions are forced and uncontrollable. Gelastic seizures are sometimes caused by brain tumors in the hypothalamus.
Many of these tumors are benign, but a malignant tumor, although less common, is also possible. Successful removal may improve neurological symptoms and help to control one’s seizures.
Death from laughter can also occur if laughing too hard leads to asphyxiation or suffocation.
Laughing too hard may prevent adequate breathing or cause a person to stop breathing, depriving their body of oxygen. This type of death is likely with a nitrous oxide overdose.
Nitrous oxide is commonly known as laughing gas, an inhaled anesthetic used during some dental procedures.
Syncope is a usually temporary loss of consciousness or fainting due to insufficient blood flow to the brain. It’s caused by low blood pressure, a reduction in heart rate, dehydration, exhaustion, and heavy sweating.
Sometimes, syncope is situational and triggered by heavy coughing or laughing. If caused by a heart condition, a related episode of syncope can lead to sudden cardiac death.
Laughter-induced syncope may not cause cardiac arrest, but it can result in a life-threatening injury if you faint and hit your head.