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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

dr-lily-tran-choc-childrens

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

Related posts:

  • Epilepsy myths: what parents should know
    At CHOC Children’s, we understand the challenges families face when a child experiences a seizure. Our Comprehensive Epilepsy Program is a national leader in pediatric epilepsy care, offering cutting-edge diagnostics, ...
  • Restoring a Happy Childhood: Rylee’s Epilepsy Journey
    Despite her happy disposition, Rylee had a big roadblock: frequent disruptive seizures. Six months past her epilepsy surgery, she hasn’t had a single seizure.
  • Overcoming Epilepsy: Gabriel’s Story
    On bad days, Gabriel would experience up to 50 seizures. Today, he is an intelligent, creative and artistic 12-year-old who dreams of being a paramedic when he grows up.

Rent Choco’s boat and support mental health programs

Enjoy the Southern California weather on Choco’s custom boat and support CHOC’s mental health programs at the same time. A portion of every rental will support these programs, and a generous donor is making waves with a $50,000 matching gift.

choc-childrens-custom-electric-boat

For rental information, please visit the Lido Marina Village Electric Boat Rental website at eboatsrental.com to get started and select “Book Now.” Be sure to select the CHOC boat.

You can also sponsor a ride on the boat for a CHOC family dealing with a serious illness or injury. Two-hour vouchers/gift certificates can be purchased at the rental office or online at eboatsrental.com. For a tax-deductible gift, make your gift via check or online donation to CHOC Foundation and designate it towards “CHOC Boat Ride.”

Stay Informed about Mental Health

CHOC Children’s has made the commitment to take a leadership role in meeting the need for more mental health services in Orange County. Sign up today to keep informed about this important initiative.



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    Anxiety is a normal human emotion and is part of life. Anxiety disorders often persist over time and generally do not go away on their own.
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6 major types of anxiety disorders

Anxiety is a normal human emotion and is part of life. Anxiety is only considered a disorder if it causes significant distress and/or keeps a person from keeping up with at least one part their life, including school, work, relationships, responsibilities or enjoyable activities. Anxiety disorders often persist over time and generally do not go away on their own. When anxiety disorders are left untreated, many people develop depression because of the toll that the anxiety has taken on their life. Anxiety is treatable by a mental health professional with short-term therapy if there are no other challenges or concerns.

We spoke to several pediatric psychologists at CHOC Children’s for an overview on the six major types of anxiety disorders.

 Phobias are intense fears of specific animals, objects or situations. This would include a fear of dogs, spiders, heights, blood draws, the dentist, or anything else. A person with a phobia either goes out of their way to avoid the feared objected or situation, or they face it, but they experience extreme distress. The fear has to last at least six months before it is considered a phobia. Children with age-appropriate fears are not the same as phobias; e.g., a 3-year-old who is afraid of the dark.

 Generalized anxiety is when someone worries about a range of different topics, which may include school or job performance, finances, world events, natural disasters, relationships with others, and other topics. These worries are hard to control and keep popping up, making it hard for people to focus on their activities. Worries happen often and intensely enough that they make it difficult to concentrate and may cause or worsen headaches, stomach aches, muscle tension, and irritability.

 Panic disorder is when someone experiences panic attacks that get in the way of their life in some way. Panic attacks can include any combination of sensations, including racing heart, rapid breathing, chest pain, dizziness, nausea or abdominal pain, blurred vision, sweating, shaking, feelings of doom, feeling like the world isn’t real (as though you are in a dream or a movie), or experiencing the moment as though you are outside of yourself. The person may also experience fear of losing control, or fear of dying or going crazy. Panic attacks can be triggered by something specific, or they can occur seemingly out of the blue. They usually reach their peak intensity within 15 minutes. It is important to note that someone can have panic attacks without having panic disorder. When someone has panic disorder, they either avoid situations that they think will cause a panic attack (such as going to the mall, going to the movie theater, or driving), or they experience ongoing worry that they will experience another attack. In the case of panic disorder, panic attacks should not be better explained by a specific phobia or by social anxiety.

 Social anxiety disorder (also known as social phobia) is a persistent fear of being judged or evaluated by others, accompanied by intense discomfort interacting with others. Someone may be intensely afraid of saying the wrong thing or feeling stupid or embarrassed. This anxiety can happen in just one specific situation, such as giving presentations at school, or in many situations wherein a child is very uncomfortable interacting with peers and adults. As a result, the person with anxiety may avoid interacting with others but still feel comfortable with close friends and family. The person with anxiety may also request that others speak for them, such as ordering food for them at a restaurant. There is a difference between shyness and social anxiety disorder. Shyness involves some minor discomfort interacting with people in certain situations, whereas social anxiety disorder actually gets in the way of the individual’s functioning at home, school, work or in their social circle. Occasional, fleeting discomfort in social situations is not necessarily an indicator of social anxiety disorder.

 Obsessive compulsive disorder (OCD) and Post-traumatic stress disorder (PTSD) used to be grouped with anxiety disorders, but now they are classified under their own category because they have unique causes, unique brain structures involved, and unique treatments that make them separate from anxiety disorders.

Separation anxiety disorder is when someone has persistent and excessive worry about being separated from or losing a caregiver or attachment figure. Separation anxiety can be a normal part of a child’s early development, but when the anxiety becomes excessive it can impair their development. Separation anxiety generates thoughts about what will happen to their caregiver when they are separated, such as whether the caregiver die or become ill. The individual also worries about what would happen to themselves if they are separated from their caregiver, such as will they get hurt or will something bad happen to them. Due to this heightened level of anxiety, the person can come across as “clingy” toward their caregiver and have difficulty leaving their side to go to school, be home alone, or go to sleep by themselves. Often, separation anxiety can occur after a stressor or loss. For example, for a young child after the loss of a pet, or for a young adult when they move out of their parent’s home for the first time.

The important thing to remember is that anxiety is both common and treatable. If your child is experiencing anxiety that is getting in the way of their activities or responsibilities (like school or chores), medical care, or relationships with others, consider reaching out to their primary care physician or a mental health provider about available treatment options.

Stay Informed about Mental Health

CHOC Children’s has made the commitment to take a leadership role in meeting the need for more mental health services in Orange County. Sign up today to keep informed about this important initiative.

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Living with juvenile arthritis: Mackenzie’s story

The first 11 months of Mackenzie’s life were like most other children. But as she was on the cusp of learning to walk, her parents Danielle and Victor noticed that she used her baby walker with a bit of a gimp.

They took her to urgent care, where a doctor ordered X-rays and noticed she was favoring her left leg. He suspected a toddler fracture—a hairline crack in the shin bone, about which not a lot can be done, and common among wobbly toddlers—and sent them home.

Journey towards a surprise diagnosis

Wanting more peace of mind, Danielle and Victor followed up with Mac’s pediatrician who referred them to an orthopedist, a doctor who specializes in bones, joints and nerves. That specialist was able to rule out the toddler fracture, but suspected Mac’s issue may be joint-related, and referred her to a pediatric rheumatologist, a doctor who specializes in the swelling and pain in muscles and joints.

“As a parent, you are your child’s advocate,” says Danielle. “Even with the right team and resources, there is still effort on the parent’s part.”

By that time, Mac had lost range of motion and could no longer straighten her leg.

“It’s terrifying when your kid has a health issue, especially when they are too young to tell you what hurts, or what’s wrong,” Danielle says.

Thankfully, the pediatric rheumatologist they met with at CHOC was able to provide a definitive diagnosis, and quickly. After blood work and a physical examination, Mac was diagnosed with an oligoarticular juvenile idiopathic arthritis (JIA). This is the most common form of juvenile arthritis, and usually affects toddlers’ knees. JIA is an inflammatory condition that develops when the immune system’s normal regulations don’t work perfectly, and inflammation occurs in the tissues surrounding joints. This results in swelling, stiffness, pain and limited movement.

“When we got to CHOC, we were so worried, but the doctor pointed us in the right direction and alleviated our fears,” Danielle recalls.

Although arthritis affects nearly 300,000 kids and teens in the U.S., it’s commonly thought of as an ailment that only affects grown-ups.

“At first, I didn’t tell anyone that Mac had arthritis. It wasn’t something that I put out there. It wasn’t that I was embarrassed, but I was scared and didn’t love talking about it,” Danielle recalls. “But then I had an epiphany—I wasn’t going to help her or anyone else by not talking about it. I needed to raise awareness that it affects infants and kids, too.”

Mac, 14 months old at that point, underwent a corticosteroid injection. These injections are an effective treatment for oligoarticular arthritis, and work by decreasing inflammation in the joint into which it is injected. Because she was so young—and fidgety like most kids her age— she was sedated for the injection. She also underwent serial casting, a process where clinicians straighten the knee while a child’s cast is drying. The temporary cast is removed after a few days and then a new cast is applied with the knee a bit straighter each time.

toddler-juvenile-arthritis-cast

“Mac has been brave since day one,” Danielle says. “The machine used to cut off her casts was loud, but my kid is afraid of nothing.”

These injections are kept to a minimum to reduce problems that can come with prolonged steroid use, like joint damage.

Juvenile arthritis treatment and remission

JIA often goes into remission, which can last for months, years or even a person’s lifetime. Mac’s JIA went into remission for two years before her parents noticed that she was having trouble walking.

Her original rheumatologist had relocated out of state, so her care was transferred to pediatric rheumatologist Dr. Andrew Shulman.

“We fell in love with Dr. Shulman the first time we met him,” Danielle says. “He calmed our fears. He made us believe we could get through this. He explained things in a way we could understand. I don’t think we could be in better hands.”

Mac and Dr. Shulman hit it off right away. In part, because she loved his signature bow-ties so much.

Three-year-old Mac underwent another steroid injection after her flare-up at age 3. Since her muscles were weak, she also underwent physical therapy to gain back strength. This triggered another two years of remission.

A few months before her sixth birthday, Mac started complaining of pain in her right ankle. Previously, her arthritis had only affected her right knee. This flare-up required two corticosteroid injections in her knee and ankle, which so far have re-induced remission.

“The easier thing about having a 6-year-old with arthritis than a 1-year-old with arthritis is that she is so much more articulate at this age,” Danielle says. “I can ask if she hurts because she fell on the playground at school, and she can help me rule that out as a potential source of pain. Now that she’s older, it’s easier to identify pain as an arthritis flare-up rather than something else.”

When she experiences a rare arthritis flare-up, her first line of dense involves naproxen, an over-the-counter anti-inflammatory drug. If more consistent flare-ups become a reality, or if additional joints start suffering, Mac may need more regular medication, in the form of Humira, a bi-weekly at-home injection that protects against over-active inflammation pathways in the immune system.

“Anytime we have a flare-up or questions, Dr. Shulman is always available to us,” Danielle says. “Having a child in pain is terrifying to a parent, and to have your doctor call you back the same day is nice.”

It’s hard to predict if arthritis in children will go away on its own or become a lifelong ailment.

choc-juvenile-arthritis-patient

“We may have had her last flare-up and she might be fine for the rest of her life. Or, her future could be systemic medication and joint replacements; I have no idea,” Danielle says. “Raising awareness and funds for research and a cure, that’s what makes me feel better about it.”

Mac’s family and friends are now active with the local chapter of the Arthritis Foundation.

Day-to-day life for a child with JIA

Mac’s day-to-day life is much the same as any other six-year-old. She loves swimming lessons, play dates, gymnastics and ballet. She’s also fluent in Mandarin, loves science and math, and is taking Spanish lessons at summer camp.

Her love for staying active is key to her overall health; muscle strength and endurance can help reduce joint pain and fatigue.

“We don’t want Mac to grow up with the stigma that there is something wrong with her,” Danielle says. “We tell her that she can do anything she sets her mind to.”

Maintenance

Mac sees Dr. Shulman every three months for a check-up. She occasionally wakes up feeling stiff, but a special heating pad to warm up her joints helps.

Since children with JIA can experience uveitis, a form of eye inflammation, Mac has regular check-ups with a pediatric ophthalmologist for monitoring.

Even with doctor’s appointments and occasional flare-ups, six-year-old Mac has no fear of doctors or hospitals.

juvenile-arthritis-patient-at-choc

“The people and environment at CHOC are so inviting. The colors, the calming effects, the videos and books and toys in the waiting rooms—everything makes it easier on the kids, and the parents, too,” Danielle says. “Everyone from the people in Dr. Shulman’s office to the team who draws blood, is amazing. They give Mac toys to distract her from the poke, and that raises her comfort level.”

Mac’s family, based in Orange County, feels lucky to have their care team so close to home.

“Some people have to drive long distances to see a qualified rheumatologist, and we are lucky to have our team so close to home,” Danielle says.

Related posts:

  • Living with Arthritis: Carson’s Story
    Seventeen-year-old Carson comes from a close-knit family of athletes and had been playing baseball for a decade when consistent, unexplained pain left his family stumped and looking for answers. Countless ...
  • Chronic Inflammation and What it Means in a Child
    “Chronic inflammation can be manifest in many ways,” says Dr. Boon. “Signs parents might see in their child include fatigue, fever, rash, joint pain or swelling, sores in their mouth, ...
  • Living with Juvenile Arthritis
    While it can’t be cured, juvenile arthritis can be well managed with long-term medications and therapy, and affected children can live normal lives, a CHOC Children’s rheumatologist says. “There are such ...

Epilepsy myths: what parents should know

At CHOC Children’s, we understand the challenges families face when a child experiences a seizure. Our Comprehensive Epilepsy Program is a national leader in pediatric epilepsy care, offering cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions from the nation’s foremost epilepsy experts.

We also recognize the alarming number of epilepsy myths that can cause confusion for children, families and friends alike. We spoke to Dr. Mary Zupanc, a pediatric neurologist who specializes in the treatment of an epilepsy, and who serves as co-medical director of CHOC’s Neuroscience Institute, to combat the most common epilepsy myths.

dr-mary-zupanc
Dr. Mary Zupanc, a pediatric neurologist who specializes in the treatment of an epilepsy, and co-medical director of CHOC’s Neuroscience Institute

Myth 1: Epilepsy is rare.

The truth: About 1% of the population has epilepsy — or more than three million people in the U.S. — but as many as one in five people will have a single seizure in their lifetime. Two or more unprovoked seizures is considered epilepsy. Provoked seizures are caused by a specific medical condition such as trauma, infection, abnormality in brain development, stroke or tumor.

Myth 2: Epilepsy is curable.

The truth: One of the most common questions I hear from parents is, “Is epilepsy curable?” and the answer is, it depends.

There are some epilepsy syndromes that go into remission in childhood, such as simple febrile seizures or childhood absence seizures. In some cases, seizures are the result of a genetic mutation that essentially “turns off” at the time of puberty.

Most of the remaining epilepsy syndromes can be controlled with appropriately-chosen antiepileptic medications, but this does not mean that the epilepsy is “cured.” In these cases, the child would still need medication to maintain seizure control.

Seizures that develop in adolescence will generally continue into adulthood and will not go into remission.

Approximately 60-70% of patients with epilepsy can have complete seizure control with the appropriate antiepileptic medication. The remaining 30-40% will continue to have intermittent seizures and should be in the care of a Level 3 or Level 4 epilepsy center, where specialists can further evaluate them for epilepsy surgery. CHOC is a Level 4 epilepsy center, meaning we offer all forms of epilepsy surgery using the very latest, safe procedures. Learn more about what makes epilepsy centers unique.

Myth 3: Epilepsy surgery is considered a last resort.

The truth: Epilepsy surgery is not a last resort. In fact, the results of epilepsy surgery are often excellent, and in many cases epilepsy surgery can eliminate seizures without causing further neurological injury. The process is complex to determine whether a child is a good candidate for epilepsy surgery, and parents are an important part of that discussion. Learn more about epilepsy surgery at CHOC.

Myth 4: If my child has epilepsy surgery, they will end up with a neurologic defect.

The truth: When epilepsy surgery is done in childhood, the brain still has a high level of plasticity, meaning it can essentially rewrite itself and adapt to change, sending certain functions elsewhere in the brain. The older a child gets, the level of plasticity in the brain decreases.

There are, of course, risks for any type of surgery. Questions related to risk and potential side effects should be an important part of an ongoing conversation with your child’s care team.

Myth 5: You shake or convulse when you have a seizure.

The truth: Another common question I get from parents is, “What does a seizure feel like?” The truth is, seizures are often not what they look like on TV. Seizures do not always cause “convulsions” or shaking.  They can be characterized by staring and not responding.  They can also begin with a funny smell or feeling of doom or dread followed by nausea and staring. Other seizures can begin with a mood change, sudden agitation, unexpected quietness, subtle change of awareness, or repetitive activities including hand movements or lip smacking or puckering.

Myth 6: I will remember my seizure.

The truth: Most people don’t remember their seizures. A small percentage of people will not experience alteration of consciousness and they might remember some of their seizure. However, most people who experience seizures will not remember their seizure and the several minutes that follow the seizure.

Myth 7: My seizure will hurt.

The truth: Parents often wonder if their child’s seizure causes them physical pain. When a child wakes up from the seizure, they may have a headache. If they have bitten their tongue during the seizure, their mouth may hurt. Sometimes children lose control of their bladder or bowel during a seizure, causing embarrassment after a seizure.

Myth 8: If you see someone having a seizure, hold them down and put something in their mouth so they don’t bite their tongue.

The truth: The jaw is full of very strong muscles. Never put anything in the mouth of someone who is having a seizure. They could bite down and break the object, causing pieces of it to go back into their airway.

Do not restrain someone having a seizure. You can, however, move objects away from them so that they don’t hurt themselves. Try to get them on their side if possible because people with epilepsy often have difficulty managing their secretions following a seizure. If they feel nauseated after a seizure, they could vomit, which can result in aspiration into their lungs.

Myth 9: Call 911 after every seizure.

The truth: If the seizure is unusual or prolonged, call 911. If your child has been diagnosed with epilepsy and you are under the care of a pediatric neurologist, follow the seizure action plan that your physician has given you.

Myth 10: Epilepsy is contagious.

The truth: Epilepsy is not an infectious disease, so it is not contagious.

Myth 11: Seizures are fatal.

The truth: It’s terrifying to watch an adult or child have a seizure. They will turn blue or experience hypoventilation (breathing at an extremely slow rate), but if you turn them on their side to avoid aspirating, they will be fine. If a seizure lasts longer than five minutes, it is unlikely to stop on its own. This is typically when 911 is called or the parents or care provider should administer rectal diazepam, a prescription medication designed to stop seizures.

Myth 12: Tics and epilepsy are the same thing.

The truth: Tics are random, stereotyped movements. They are never associated with an altered level of consciousness. They do not occur during sleep or as someone is waking up, which are symptoms associated with epileptic seizures. Here’s what parents should know about children and tics.

Myth 13: Having a seizure means someone is possessed by evil spirits.

The truth: Seizures can be caused by a number of genetic or environmental factors. For most people with epilepsy, an underlying cause is identified. Sometimes, despite the best efforts of the physician and modern medicine, an underlying cause can’t be found. It’s important to remember that epilepsy is a very common condition, affecting more than three million people in the U.S.

Myth 14: All people with epilepsy have cognitive disabilities

The truth: Most people living with epilepsy are cognitively normal. Sometimes people who observe a complex partial seizure― which involves an altered state of consciousness and may include rhythmic jerking, drooling, vomiting or involuntary movements ―may be misconstrued as a psychiatric illness. Epilepsy is not a psychiatric illness. It is a biological condition that causes increased stimulation in the brain.

VIDEO: Dr. Zupanc explains epilepsy vs. seizures

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