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What Parents Need to Know About SUDEP – Sudden Unexpected Death in Epilepsy

Epilepsy affects up to 470,000 American children and about 11 million children ages 15 and under worldwide. The condition causes regular seizures that can be difficult to control, and are—in some cases— deadly. Most people with epilepsy live long, healthy lives, but the diagnosis is life-changing. As a parent, it’s normal to feel overwhelmed.

When a child is diagnosed with epilepsy, many pediatricians focus on explaining how to treat epilepsy and manage seizures, says Laura Masters, MD, a pediatric neurologist at Texas Children’s Hospital North Austin. While management is important, doctors often sidestep one crucial topic: sudden unexpected death in epilepsy, or SUDEP.

Though rare, the Centers for Disease Control and Prevention (CDC) estimates that SUDEP affects at least 1 in 1,000 people with epilepsy each year. Learning more about the condition could end up saving your child’s life. While there is no known way to prevent SUDEP, studies suggest there are factors you may be able to control to greatly reduce your child’s risk.

What is Sudden Unexpected Death in Epilepsy (SUDEP)?

SUDEP is the death of a person with epilepsy where the cause can’t be determined. “While all patients with epilepsy are at risk of drowning or choking to death, SUDEP is a separate, poorly understood occurrence,” explains Tyler Terrill, MD, a pediatric neurologist and the medical director of Children’s Health Neurology Prosper, in Prosper, Texas.

While SUDEP can happen anytime, it usually occurs following a seizure. “Most cases happen at night and without warning,” Dr. Terill says. “It can occur even when parents and doctors do everything right.”  He emphasizes that while the condition is rare, parents of children with epilepsy can educate themselves to minimize the risk as much as possible.

How common is SUDEP?

Epilepsy-related deaths in children are rare, and those caused by SUDEP are even rarer. In the U.S., SUDEP affects about 1 in 4,500 children with epilepsy in any given year. “It’s important to remember that 4,499 of 4,500 children won’t be affected,” says Deepak Lachhwani, MD, a staff pediatric epileptologist at Cleveland Clinic’s Epilepsy Center.

What causes SUDEP?

SUDEP is poorly understood, and researchers have yet to find a specific cause. Because most incidents happen at night, when no one’s watching, it’s hard to pinpoint the exact mechanisms. Most SUDEP-related autopsies show signs of slowed or arrested breathing, but the actual cause of death isn’t always apparent.

Dr. Masters points to several factors that may contribute to SUDEP:

  • Disrupted breathing. In some cases, seizures cause a communication breakdown between the brain and respiratory system, pausing or stopping breathing altogether. In other cases, a person’s airway can become physically blocked. SUDEP can occur if oxygen levels drop too low.        
  • Brainstem malfunction. The brainstem regulates autonomic functions, or involuntary processes like breathing, heart rate, blood pressure, and body temperature. “Some studies have shown that the brainstem may be affected over time in patients with epilepsy, and this may make them more susceptible to failure of these functions,” Dr. Masters explains.
  • Heart irregularities. Seizures can rarely cause the heart to beat irregularly or stop beating.

“Many patients who die from SUDEP likely have one or some combination of these factors,” Dr. Terrill says.

What are the risk factors for SUDEP?

SUDEP is a risk for anyone with epilepsy, but Dr. Terrill says that children with epilepsy caused by a severe genetic disorder are at a much higher risk. For example, children with Dravet Syndrome (a genetic form of epilepsy that causes treatment-resistant seizures) are 15 times more likely to die from SUDEP compared to kids with other childhood-onset epilepsies. Kids with Lennox Gastaut Syndrome (a severe type of epilepsy that affects 3%-4% of children with epilepsy) are 24 times more likely to die prematurely compared to other children with epilepsy, often due to SUDEP. 

Another common risk factor for SUDEP is having generalized tonic-clonic seizures (GTCS). Formerly called grand mal seizures, “these are the hallmark kinds of seizures that we think of in the movies, where someone is shaking uncontrollably,” says Laura Lubbers, PhD, the chief scientific officer at Cure Epilepsy. People with epilepsy who experience three or more GTCS per year are 15 times more likely to pass away from SUDEP compared to those who don’t have GTCS.

Having intractable epilepsy (seizures that can’t be completely managed with medication), convulsive seizures during sleep, or an epilepsy diagnosis at a very young age are also related to a higher risk of SUDEP.

How to reduce your child’s risk of SUDEP

Even if your child has one or more SUDEP risk factors, the experts we interviewed say you can do plenty to protect your child’s health (and give yourself greater peace of mind). Here are their recommendations:

1. Start with your doctor

SUDEP can be uncomfortable to talk about, but discussing it with your child’s care team, including their pediatric neurologist and/or epileptologist, and their pediatrician, could save their life.

Male doctor talking to young couple
Credit: iStock | seb_ra

Anup Patel, MD, a pediatric neurologist at Nationwide Children’s Hospital, says it’s a healthcare provider’s responsibility to provide this information. If your child’s neurologist hasn’t already brought up SUDEP, jot down your questions and bring them up at your next visit. “Your neurologist is your best personal resource for medically sound, updated information,” says Dr. Masters.

2. Dose your child’s antiseizure medications as prescribed

“The best and most important thing that you can do for your child is to give all antiseizure medications as ordered, on a consistent schedule each day,” Dr. Masters says. Likewise, monitor your child to see if they experience any side effects.     

If your child has an adverse reaction or refuses to take their medication, ask their doctor about alternatives. Various antiseizure medications are available, and your child’s comfort is important. No two seizure prevention plans are exactly alike, and each child may have their own unique reactions, so work closely with your child’s care team to make the best decisions for your child.

High doses of some antiseizure medication are known to slow breathing. If you have concerns related to the amount of medication or number of medications your child is taking, talk to your child’s neurologist about whether you might be able to wean off of one or reduce your child’s dosing.

Whatever you do, be sure to talk to your doctor before changing your child’s medication plan: Missing doses or abruptly stopping antiseizure medication(s) may increase seizures, which may increase the risk of SUDEP.

3. Maintain a regular sleep schedule

Good sleep is key to managing your child’s epilepsy. Studies suggest that sleep deprivation can affect electrical activity in the brain, increasing the risk of seizures. Sleep needs vary by age, but experts recommend maintaining a regular sleep schedule that guarantees at least 8 hours of quality sleep at night, and up to 10 hours if possible.

If sleep is hard to come by for your child, ask their doctor whether prescription or over-the-counter sleep aids are an option. Melatonin or tryptophan supplements, for example, won’t interfere with antiseizure medications and may help kids to sleep better. “Melatonin is something I often discuss and use in my patients,” Dr. Terrill says.

4. Monitor your child during sleep

While it’s true that nighttime supervision can reduce your child’s risk of SUDEP, it’s not realistic to expect you’ll keep an eye on your child all night. “Parents need sleep, too!” says Dr. Terrill.

Current seizure detection devices are not FDA-approved for infants. For more peace of mind, you may want to consider getting an audio/visual baby monitor, which can detect abnormal movements and sounds.

Embrace2 Seizure Monitor watch and phone app
Credit: empatica.com

If your child is older, talk to your doctor about FDA-approved wearable seizure detection devices. Dr. Masters cites the Empatica Embrace2, which is FDA-cleared for children ages 6 and up. This wristwatch has several built-in technologies that can detect the forceful movements of GTCS (tonic-clonic seizures), instantly alerting parents when they occur via the product’s app.

“It’s important to emphasize that no device has been proven to prevent SUDEP,” Dr. Masters adds. “However, these devices may help notify you when your child is having a seizure at night, which is the highest-risk time for SUDEP.”

5. Keep a seizure diary

Track your child’s antiseizure medications, sleep habits, and symptoms in a seizure diary. This can help you to identify seizure triggers and monitor progress over time.

Some parents write this information in a notebook, while others use electronic apps like Seizure Tracker. Bring the diary to medical appointments to keep your child’s care team informed.  

6. Keep a seizure rescue medication on hand

If you don’t already have an “as-needed” rescue medication prescribed to you, ask your pediatric neurologist about getting one. A rescue medication can be used at home to stop seizures quickly, reducing the risk of emergencies. Generally speaking, they are used when a seizure goes on for too long, increasing the risk of brain injury.

Make sure you understand your doctor’s instructions to administer rescue medications, and ask for their direct phone number (or their facility’s emergency department) in case of an emergency. If you’re unsure what to do during a seizure, don’t hesitate to call for advice.

It’s also important to discuss side effects of seizure medications with your doctor. Because rescues are high-dosage seizure medications, your child could experience withdrawal symptoms in the following days.

7. Learn Cardiopulmonary Resuscitation (CPR)

Woman showing infant CPR on training doll. Performing two finger chest compression.
Credit: iStock | OLJensa

All parents of children with epilepsy can benefit from learning CPR, which “has been shown to save lives in SUDEP,” Dr. Terrill says. “Getting trained in CPR can give parents the tools to give their child the best chance should the worst happen.”

One small observational study surveyed pediatric epilepsy monitoring units around the world to assess children’s breathing in cases of SUDEP or near-SUDEP. The researchers looked at 29 cases where an infant’s heart stopped following a seizure. The researchers found that all infants who received CPR within three minutes after their hearts stopped beating were successfully resuscitated.      

“I don’t advise giving CPR to a patient who is actively seizing,” Dr. Terrill says. “If a patient is in the middle of a seizure, they should be laid down on their side in a safe place with the parents following the safety plan laid out by their physician. However, if a patient isn’t breathing and/or doesn’t have a heart rate afterward, CPR can be a life-saving intervention.”

While SUDEP is very rare and not well understood, you can reduce your child’s odds by pinpointing and minimizing their potential risk factors. Researchers continue to study the condition and regularly make important breakthroughs that offer hope for parents and clinicians. “Research is critical for helping us understand who is at greatest risk of SUDEP,” Dr. Lubbers says. “We’re focused on a cure.”  
    


References and further reading

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