Sudden unexpected death in epilepsy: What parents should know

By Dr. Lily Tran, pediatric neurologist and epileptologist and medical director of CHOC’s comprehensive epilepsy center

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Sudden unexpected death in epilepsy (SUDEP) occurs when someone with epilepsy suddenly dies unexpectedly and the cause is not related to an accident or seizure emergency. A seizure emergency could include status epilepticus, where someone has a seizure lasting more than five minutes, or two or more seizures within a short period of time without the person returning to normal in between. Aside from epilepsy, this person is otherwise considered healthy, and no other cause of death can be found. Each year, one in 1,000 people in the U.S. die from SUDEP.

There are several risk factors for SUDEP. These include:

  • Poorly controlled seizures, especially tonic-clonic seizures, characterized by a loss of consciousness and violent muscle contractions
  • Seizures, especially tonic-clonic seizures, that tend to occur in sleep or at night
  • Not taking medications regularly or as prescribed
  • Stopping or changing medications suddenly
  • Young adult age

The exact cause of SUDEP is unknown. More research is needed to understand its cause. Some research suggests that seizures lead to changes in the brain and/or heart’s ability to function, and related breathing difficulties may lead to SUDEP.

For anyone with epilepsy, the ultimate goal is always to minimize seizures as much as possible and strive to become seizure-free. There are several other things people with epilepsy can do to help prevent SUDEP, including:

  • Take your anti-epileptic medications as prescribed. Do not stop medications abruptly without talking to your doctor.
  • Stay healthy by eating a well-balanced diet and getting regular exercise.
  • Avoid potential seizure triggers.
  • Make sure your family members and/or caretakers understand seizure first-aid

Although seizure-alert devices are on the market, there is no scientific data to support the idea that these devices help prevent SUDEP. More evidence is needed to show they can accurately detect seizures and prevent SUDEP.

VIDEO: A CHOC neurologist explains epilepsy vs. seizures

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CHOC recognized as one of nation’s best children’s hospitals

CHOC Children’s is one of only 50 pediatric facilities in the nation to earn recognition as a best children’s hospital by U.S. News & World Report. The following CHOC specialties are honored in the 2019-20 Best Children’s Hospitals rankings: diabetes/endocrinology, cancer, neonatology, neurology/neurosurgery, pulmonology and urology. Cancer ranked in the “top 20.”

“The national recognition for CHOC’s cancer program is well-deserved. There’s nowhere else I’d rather have gone through treatment than CHOC,” says 17-year-old Sydney Sigafus, CHOC patient and cancer survivor. “Everyone who works at CHOC cares about you as a person, not just a patient. I was included in every decision and conversation about my care.”

The Best Children’s Hospitals rankings were introduced by U.S. News in 2007 to help families of children with rare or life-threatening diseases find the best medical care available. Only the nation’s top 50 pediatric facilities are distinguished in 10 pediatric specialties, based on survival rates, nurse staffing, procedure and patient volumes, reputation and additional outcomes data. The availability of clinical resources, infection rates and compliance with best practices are also factored into the rankings.

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“We understand how scary it can be for parents whose children are dealing with life-threatening illnesses or injuries. That’s why we are committed to the highest standards of care, safety and service,” says Dr. James Cappon, CHOC’s chief quality officer. “While we are proud of our accolades, including being named a best children’s hospital, we remain focused on preserving the magic of childhood for all kids, whether they are seriously ill or healthy, or somewhere in between.”

Learn more about the Best Children’s Hospitals rankings.

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Can children outgrow autism?

A study recently published in the Journal of Child Neurology suggests that children may outgrow autism. We spoke to Dr. J. Thomas Megerian, pediatric neurologist and clinical director of the Thompson Autism Center at CHOC Children’s, about what parents should know about these findings.

What does this study’s findings mean for parents?

Many parents ask me, “Will my child outgrow autism?” and I always tell them that what we hope for is that with services and growth, the child will improve so much that after as little as a few years, they no longer meet the criteria for Autism Spectrum Disorder (ASD). Outgrowing the label may mean they have learned to compensate or overcome some challenges like socialization or repetitive movements. They may have little features left of ASD, and what symptoms they do have, may cease to interfere with their development or daily lives. When they have progressed to the point where they have outgrown the label, any remaining traits may be so small that only a parent would notice, but a new person who has just met the child wouldn’t pick up on anything.

However, I advise my patients’ parents that if and when their child outgrows the label of autism, they may still have other co-occurring issues like anxiety, attention deficit hyperactivity disorder (ADHD) or learning disabilities that require ongoing care.

So yes, indeed this study should give parents hope surrounding a child’s ability to outgrow the autism label, despite their other potential ongoing issues.

In some instances, schools may suggest a decrease in services because a child has improved and outgrown the label of autism. That same child may still be struggling with organization or learning certain subjects. Parents may be in a position to say that just because their child has outgrown the autism label doesn’t mean they do not have a need for additional support.

What does life look like for a child previously diagnosed with autism who is no longer on the spectrum?

Learning disabilities, obsessive compulsive disorder, and attention deficit disorder are common among children with ASD. Rates of other disorders are common among children with autism, including: gastrointestinal disorders, ear infections, seizures and anxiety. They may clear up later in life or become better managed, but they don’t necessarily go away at the same time as their autism label.

Residual symptoms of these co-occurring diagnoses may last into adulthood. For example, a child may outgrow their ASD label but still have anxiety that can be managed by cognitive behavioral therapy.

Why is early detection and early intervention of autism so important?

Early detection and intervention help many kids outgrow the autism label in the future due to improvements with socialization and repetitive behavior. It’s important for people to remember that just because they have lost the autism label, doesn’t mean they don’t have other diagnoses or disorders that may require ongoing treatment.

There’s no question that early intervention makes a big difference in helping kids with the potential to outgrow their ASD diagnoses achieve that milestone even sooner. The trajectory has changed for many of those kids.

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Living with polymicrogyria: Angelina’s story

Johanna and her husband Graham were expecting a healthy baby.  Already parents to one little girl, they were looking forward to expanding their family.

At Johanna’s 33-week anatomy scan, she and Graham were thrilled to learn they were expecting a girl, but shocked to learn she might have club foot, a birth defect where the foot is twisted out of shape or position. They learned there was a chance it could be due to a neurological defect since everything else was showing up as normal.

“We started mentally preparing ourselves for our baby to have a club foot,” Johanna said. “We had another anatomy scan, but they couldn’t say for certain what was going on.”

On January 26, 2018 Johanna delivered a baby girl named Angelina via c-section. A neonatologist was in the delivery room in case Angelina needed immediate medical attention after birth. She was having trouble swallowing and was monitored in that hospital’s neonatal intensive care unit (NICU).

Three days later, a CHOC neonatologist rounding at the delivery hospital recognized that Angelina needed a higher level of care and a bigger team of specialists. He suggested that she might need an MRI to give doctors a better look at her brain, and determine if her condition was neurological.

“Even though I’d never been to there, I knew that when it was an option to go to CHOC, you go to CHOC,” Johanna said.

Their older daughter Genevieve had been born at St. Joseph Hospital in Orange, next door to CHOC Children’s Hospital.

“I was so freaked out before I had my first child, because of all the things that can go wrong during childbirth. I delivered Genevieve at St. Joseph because I liked knowing that CHOC as right next door if we needed them” Johanna said. “When they gave us the option to send Angelina to CHOC, there was no question—we just immediately went.”

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Angelina during her stay in CHOC Children’s NICU.

Angelina was admitted to CHOC’s NICU and evaluated by neonatologist Dr. John Tran, of CHOC’s neurocritical NICU. Special rooms of CHOC’s NICU are designated for the neurocritical NICU, where neonatologists and neurologists have the expertise and equipment to carefully treat babies with neurological issues.

An MRI showed that Angelina had polymicrogyria, a condition characterized by abnormal brain development. Johanna and Graham had never heard of this condition and had a hard time processing the diagnosis. Then they met with Dr. Donald Phillips, a pediatric neurologist at CHOC.

He explained to the family that typically, the surface of the brain has many ridges and folds, called gyri. In babies born with polymicrogyria, their brain surface has too many folds that are too small to process information received, which leads to problems with body functioning, similar to the effect a stroke can have on the brain.

Dr. Tran explained the spectrum of care for polymicrogyria. Some patients are nonverbal, some go to school, and some even live with this condition and never know. It was too soon to tell where on that spectrum Angelina would fall.

“Caring for babies with neurological conditions can be difficult. Not only are you medically treating a newborn baby, but you are also counseling a family and giving them an uncertain prognosis,” says Dr. Tran. “In the neurocritical NICU, our first goal it to treat the baby’s underlying condition. The second goal is to educate the most important members of our care team― the parents. We know that the NICU is not a part of the birth plan, but our job is to help alleviate some of the anxiety that comes with uncertainty. We strive to optimize the potential of our patients, whatever it might be, as they go home.”

The diagnosis was a lot for her parents to take in.

“We knew we were getting the best care for our daughter, but it was such heavy news,” Johanna said. “Even with a typical kid, we don’t really know what their life will be like. Every life is a gift. Once I started going towards that mentality, I realized that nothing is certain, even with typical kids.”

At her delivery hospital, one of the red flags that Angelina needed a higher level of care was that she kept crashing when she was breastfeeding.

“It made me freaked out to feed my daughter,” Johanna said.

Soon after coming to CHOC, Angelina began swallowing therapy. When someone experiences swallowing difficulty, they are at risk for food or liquid entering their lungs, called aspiration, which may lead to pneumonia. Karin Mitchell, a speech and language pathologist who specializes in the NICU setting, worked with Angelina on swallowing safety. Karin guided baby Angelina through exercises for her mouth and tongue to learn how to properly swallow saliva. Then, they could work on breastfeeding support and syringe feeding.

Angelina couldn’t move her legs when she was born, and her parents weren’t sure if she ever would. Thanks to physical therapy, today she can bend her legs more than 90 degrees.

Throughout their stay in the NICU, Johanna and Graham were thankful to have the ability to sleep overnight in their daughter’s private room. Because Angelina was born during flu season, her 3-year-old sister couldn’t visit the NICU. Her parents would stay at CHOC all day, go home to do their older daughter’s bedtime routine, and then one parent return to CHOC to sleep alongside their new baby.

“We had the privacy we needed, and I felt comfortable doing kangaroo (skin to skin) care,” Johanna said. “I hadn’t planned on my baby staying in the hospital, and at least having our own room, and even something as small as being able to watch TV gave me a small sense of normalcy.”

Johanna and Graham also appreciated the sense of normalcy provided by a Super Bowl party thrown for parents on the unit. An infant CPR class offered on the unit helped them feel more prepared to eventually take their baby girl home.

For big sister Genevieve, CHOC offers an innovative webcam system so family members can be together and bond with their newborns when they can’t be at the bedside. The system allows families to see real-time, live video of their infant remotely, from anywhere they can securely log onto the internet.

“CHOC had a lot of things in place, like the secure camera in Angelina’s room, to make things easier on us as a family,” Johanna said.

A month after she was born, Angelina got to go home for the first time.

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Angelina dressed as a pumpkin on her fist Halloween.

“We were so ready to take her home, and finally be together as a family,” Johanna said. “But it was still a little nerve-wracking. We bought four different types of baby monitors; we were used to seeing her surrounded by machines.”

A few weeks later, Angelina began swallowing therapy twice per week and physical therapy three times per week. Now 15 months old, the amount of progress she has made has made her parents proud.

She couldn’t move her legs at birth, but a year later she is rolling and reaching. Her parents credit her CHOC physical therapist Lauren Bojorquez.

“Lauren didn’t just think of what Angelina was doing now; she was always thinking ahead about what would benefit her in the future,” Johanna said.

For example, Lauren and Angelina worked on rolling because it would eventually help her learn to sit. When babies roll, it helps develops muscles that will later help them sit.

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Angelina with her speech and language pathologist Annie.

Meanwhile, Angelina was working with CHOC speech and language pathologist Annie Tsai to learn how to cough, swallow, and accept food by mouth. Swallowing therapy focused not on quantity of food consumed but on quality of how the child feeds or swallows safely. Angelina’s work with Annie focuses on movement, strength and coordination within the mouth to prepare for eventually swallowing food.

Angelina still receives most of her nourishment through a feeding tube, also called a g-tube. The tube can stay in a patient’s stomach for months or years and allows the child to receive fluids, medicines and nutrition when they can’t take in enough nutrition by mouth. Every few months, Angelina sees gastroenterologist Dr. Jeffrey Ho for follow-up appointments for nutrition, feedings and g-tube care. Dr. Ho remains in close contact with Annie, her speech and language pathologist.

“Being able to eat in a typical manner is always the goal,” says Dr. Ho. “Every baby and child are different. Right now, we are focusing on what we can do to better optimize her potential to orally feed.”

Now, Angelina can sit in a highchair, bring her hands to her mouth, accept small tastes by mouth and better clear her congestion especially when she’s sick.

“Something I hadn’t realized before Angelina was how big a part food plays in our culture. As people get older, going out to eat or meeting for coffee is a social activity. I was sad that she wouldn’t get to have those same experiences,” Johanna said. “When she started to accept tastes by mouth, it made me think of her in the future, and being able to go out with friends and at least taste something, and still participate socially.”

To further practice feeding therapy at home, Angelina has a mesh pacifier typically used to soothe teething babies. Her parents often put the same foods in her pacifier as the rest of the family is eating. So far, there hasn’t been a food she’s tried that she hasn’t liked.

Angelina’s paternal grandma was an adult speech and language pathologist by training. When Angelina started speech therapy, she updated her license and certification to help her granddaughter at home. She comes to some of her sessions at CHOC and learns from Angelina’s care team.

Also participating in therapy is big sister Genevieve, who helps hold the pacifier and can even spoon-feed her baby sister, with a little bit of help.

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Angelina with her family at Disneyland.

“I am super grateful for CHOC,” Johanna said. “That’s why our family started participating in CHOC Walk when Angelina was born.”

These days, Angelina likes playing with toys, playing with her big sister, and listening to all types of music.

“I had a lot of preconceptions about disabilities and special needs,” Johanna said. “Having a child with special needs is not what I thought it would be. It’s better than that.”

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Is Your Child’s Headache Cause for Concern?

When your child complains of a headache, it can be anything from a plea to stay home from school in hopes of avoiding a test, to a sign of something more serious. But how can you tell the difference? And when is it time to see the pediatrician? Dr. Sharief Taraman, a pediatric neurologist at CHOC Children’s, offers advice on what parents can do to keep headaches at bay, the importance of identifying a pattern in your child’s headaches, options for treatment, and what types of headache warrant a trip to the emergency department.

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Dr. Sharief Taraman, a pediatric neurologist at CHOC Children’s, offers advice for parents concerned about their child’s headaches.

First, it’s important to be able to identify what type of headache your child may be suffering from.

What type of headache does my child have?

Migraine symptoms in kids

At least 5 attacks that meet the following criteria:

  • Headache lasting 1 – 72 hours
  • Headache has at least two of the following features:
    • Pain on both sides or only one side of the head
    • Pain is pulsating
    • Moderate to severe intensity
    • Aggravated by routine physical activities
  • At least one of the following:
    • Nausea and/or vomiting
    • Sensitivity to light or noise

If your child has more than 15 headache days per month over a three-month period, and at least half of those are migraines, they may be suffering from chronic migraines.

It’s a common misconception to assume that only adults suffer from migraines, which isn’t true, says Dr. Taraman. If your child has migraines, they are not alone. About 1 out of every 20 kids, or about 8 million children in the United States, gets migraines. Before age 10, an equal number of boys and girls get migraines. But after age 12, during and after puberty, migraines affect girls three times more often than boys.

Tension headache symptoms in kids

  • Headache lasting from 30 minutes to seven days
  • Headache has at least two of the following characteristics:
    • Pain in two locations
    • Pressing or tightening feeling (not a pulsing pain)
    • Mild to moderate intensity
    • Not aggravated by routine physical activity such as walking or climbing stairs
  • No nausea or vomiting – many children experience a loss of appetite
  • Either sensitivity to light or sensitivity to sound
  • Tension headaches occur most often in children ages 9-12

Cluster headache symptoms in kids

  • At least five headaches that meet the following criteria:
    • Severe pain in one location: within the eye, above the eyebrow, or on the forehead, that lasts from 15 minutes to three hours when left untreated
  • Headache is accompanied by at least one of the following symptoms on the same side of the body as their pain:
    • Conjunctival injection and/or lacrimation
    • Nasal congestion and/or excess mucus in the nose
    • Eyelid swelling
    • Forehead and facial swelling
    • Droopy eyelid and/or small pupil
    • A restlessness or agitation
  • Cluster headaches usually start in children at around 10 years old

Post traumatic headache symptoms in kids

  • Acute post traumatic headache: lasts less than three months and caused by a traumatic injury to the head
  • Persistent post traumatic headache: lasts more than three months and caused by a traumatic injury to the head
  • Both acute and persistent headaches develop within one week of: the injury to the head, regaining of consciousness following injury to the head, or discontinuing medicine that impairs the ability to sense a headache following a head injury
  • Extended recovery risk factors:
    • Prolonged loss of consciousness or amnesia
    • Females
    • Initial symptom severity
    • Premorbid history of ADHD, mood disorders, and migraines

Sleep apnea headache symptoms in kids

  • Typically occurs in the morning
  • Pain is present on both sides of the head
  • Lasts more than four hours
  • Not accompanied by nausea, nor sensitivity to light or sound

Medication overuse headache symptoms in kids

  • Headaches on 15 or more days per month
  • Takes over-the-counter medication for headaches more than three times per week over a three-month period
  • Headache has developed or gotten worse during medication overuse
  • Pattern of headaches resolves or improves within two months after discontinuing the overused medication

What to do when your child has a headache

A variety of non-medical interventions can be helpful for children who are suffering from headaches. These non-medical interventions for headaches include: ice packs; warm baths; taking a nap in a cool, dark room; neck and back massage; and taking a walk.

Parents shouldn’t be tempted to immediately turn to medication such as ibuprofen or naproxen, says Taraman.  Over-the-counter pain medications (such as Tylenol or Motrin) should be limited to no more than three days per week with no more than two doses per day, in order to avoid medication overuse headaches. Follow the dosing instructions on the label and ask your child’s pediatrician or pharmacist any questions before beginning a treatment regimen. Follow dosage instructions given by your physician or pharmacist, or download a guide to ibuprofen and naproxen.

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How to avoid headaches

There are a number of things parents can do to prevent headaches, says Dr. Taraman. These include:

How to talk to your pediatrician about your child’s headaches:

Keep a journal of your child’s headaches so you can identify a pattern, and show your child’s primary care physician. If you don’t have a primary care provider, find one near you. In your headache journal, keep track of:

  • Headache start date and time
  • What happened just before the headache?
  • How much did your head hurt, on a 0-10 pain scale?
  • Where did your head hurt?
  • What did you feel just before and during the headache?
  • What did you do to make yourself feel better?
  • Did you feel better, on a 0-10 pain scale?
  • Headache end date and time

Your child’s pediatrician may adjust your child’s diet, headache hygiene routine, or their NSAID regime. In some cases, your primary care provider may refer you to a pediatric neurologist, who have specialized training in the nervous system (brain, spinal cord, muscles and nerves), who work in tandem with imaging and other specialists and pediatricians as necessary.

Patients should immediately be taken to the emergency department for some headaches including:

  • Thunderclap headache: severe, sudden onset of pain that occurs anywhere in the head, and grabs your attention like a clap of thunder. Pain usually peaks within 60 seconds to a few minutes.
  • Any headache that comes with weakness or numbness on one side of the body, or changes in consciousness or awareness.
  • Blurred, double or loss of vision that persists after the headache resolves.

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