What Parents Should Know About Infantile Spasms

With Infantile Spasms Awareness Week recognized Dec. 1 through 7, we spoke with a CHOC Children’s neurologist about this type of epilepsy that occurs in young infants typically between ages 3 and 8 months.

Infantile spasms should be considered a medical emergency due to the potentially devastating consequences on the developing brain, Dr. Mary Zupanc, chair of neurology at CHOC, says. Immediate treatment is critical because many children with infantile spasms go on to develop other forms of epilepsy.

infantile spams
Dr. Mary Zupanc, chair of neurology at CHOC Children’s, treats patients with infantile spasms

“A developing brain undergoing an ‘epileptic storm’ essentially becomes programmed for ongoing seizures and cognitive/motor delays,” she says.

Here’s what parents should look for when potentially identifying infantile spasms:

  • Infantile spasms often happen in clusters, with each spasm occurring every five to 10 seconds over a period of three to 10 minutes or longer
  • Though there is almost always a cluster of spasms in the morning when the child awakens from sleep, infantile spasms can occur at any time during the day or night

If infantile spasms are suspected, parents should seek a referral to a pediatric neurologist immediately. CHOC neurologists admit these children urgently to the hospital for long-term video electroencephalogram (EEG) monitoring to confirm the diagnosis.

If infantile spasms are confirmed, the first line of treatment employed by CHOC neurologists is a high-dose adrenocorticotropic hormone, or ACTH. The course of therapy is about six weeks, and the treatment is administered by injection. Because parents are often initially afraid to inject their baby, CHOC neurologists and nurses work closely with families to help them become comfortable with the process before heading home.

The effectiveness of ACTH may be as high as 85 percent, and the treatment has better success rates if started within four to six weeks of seizure onset. Seizure control and a normalized EEG reading mark a successful therapy.

Children undergoing ACTH might have some side effects including high blood pressure, increased appetite and weight gain, elevated sugar in the blood, temporary suppression of the immune system, and sometimes an upset stomach. All side effects are monitored during treatment and disappear at its conclusion.

The causes of infantile spasms vary. Some children may have tuberous sclerosis, a multisystem disorder; abnormalities in the brain’s formation; stroke; an infection such as meningitis or encephalitis; trauma; or genetic disorders such as Down syndrome or defects in the metabolism of proteins, sugars, and fats.

Learn more about CHOC Children’s Neuroscience Institute.

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After Years of Seizures, Overcoming Epilepsy

Deena Flores has her sights set on a big party next spring for her daughter, Mareena.

It’s not for her birthday, but rather an anniversary of sorts. By May 2017, Mareena will have lived without seizures longer than she endured them.

It’s a milestone that once seemed unreachable for the Flores family, who finally got relief from years of seizures when they found help from CHOC Children’s Neuroscience Institute.

“The seizures flipped our family. We didn’t go anywhere. We wouldn’t want to leave her with anyone. It was a deep dark hole for a few years,” Deena says. “To see her flourish and open her wings and experience life now is amazing.”

epilepsy surgery
Mareena is flourishing after epilepsy surgery.

Now 9, Mareena began experiencing seizures at around 10 months old. After a normal birth and infancy, she suddenly started rolling her eyes backward and going limp.

For years, the family went from hospital to hospital and doctor to doctor, looking for an explanation.  Walking, talking and developing normally, Mareena would grow out of it, physicians told the family.

By age 4, Mareena was enduring up to 20 seizures a day, mostly linked to sleep. Medications were not working. Deena and her husband would take turns sleeping in their daughter’s room, desperate to record every seizure in hopes of finding a pattern.

Mareena’s parents reached their breaking point in fall 2011. One morning while eating breakfast, Mareena seized, fell from her chair and hit her head on the tile floor. That was enough.  Mareena needed help badly, and they turned to Dr. Mary Zupanc  and CHOC’s comprehensive epilepsy program.

epilepsy surgery
Dr. Mary Zupanc, director of the comprehensive epilepsy program and chair of neurology at CHOC Children’s

“Within the first five minutes of the appointment, Dr. Zupanc told us that Mareena’s medication wasn’t working, and because epilepsy is a progressive disease, it was critical that we find a new solution quickly,” Deena recalled.

Mareena began undergoing extensive testing, including long-term video electroencephalogram (EEG) monitoring to determine seizure type and seizure frequency. During that time, Dr. Zupanc first broached the subject of surgical intervention to help Mareena.

“The idea of brain surgery was scary,” Deena recalled. “But at the same time, it was a relief, especially after all the years we lost while trying to convince doctors that something was wrong”.

In May 2012, the family began the process for surgical intervention, including an MRI scan of the brain to look for subtle structural changes in the brain and a PET scan, which looks at glucose metabolism in the brain.

Mareena’s case was then reviewed by a group of CHOC physicians. The physicians, including Dr. Zupanc, were in agreement that Mareena should have epilepsy surgery.  However, in order to identify the exact seizure focus, invasive EEG monitoring was required. This means that electrodes had to be placed directly on the surface of the brain. Over a series of days, Dr. Zupanc and the other epilepsy specialists determined that the seizures were coming from the brain’s left temporal lobe. Next, surgeons removed that portion of the brain.

Mareena has been seizure-free ever since. She still takes one low-dose of antiepileptic medication, but her visits with Dr. Zupanc have reduced significantly. She no longer requires long-term video EEG monitoring or other studies.

Mareena is now headed for third grade.  Though she does have some mild cognitive delays—due to the underlying cause of her epilepsy and her prior high seizure frequency, she is thriving and doing very well. Deena says people are shocked when they learn about Mareena’s history.

“She’s a walking miracle,” Deena says.

Learn more about epilepsy surgery.

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Seizure-Free at Five, Thanks to Epilepsy Surgery and ROSA Robot

Five-year-old Ian Higginbotham recently enjoyed his best summer yet. He experienced his first family vacation. He learned to swim and ride a bike. He got himself ready for kindergarten. These are milestones most kids and parents, alike, eagerly welcome. But there was a time when Ian’s parents weren’t certain their son, who was born seemingly healthy, would enjoy such happy pastimes.

Ian began talking and walking in his sleep as a toddler. When the episodes, including night terrors, increased in frequency and severity, his mom Lisa made an appointment with the pediatrician. One day, Lisa knew something just wasn’t right and didn’t want to wait for the appointment to get Ian checked out. She and her husband Derek took him to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital. To her surprise, doctors diagnosed her son with epilepsy.   Ian’s “sleepwalking” and “night terrors” were actually seizures.

The family was referred to CHOC’s comprehensive epilepsy program. A national leader in pediatric epilepsy care, CHOC’s comprehensive epilepsy program offers cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions. CHOC was the first children’s hospital in the state to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, signifying the highest-level medical and surgical evaluation and treatment for patients with complex epilepsy.

Ian’s neurologist Dr. Andrew Mower suspected he was experiencing complex partial seizures, which was confirmed by video EEG monitoring. Complex partial seizures start in a small area of the temporal or frontal lobe of the brain, and quickly involve the areas of the brain affecting alertness and awareness. The pattern of Ian’s seizures suggested they were originating from the right frontal lobe. Dr. Mower knew Ian and his family were in for a tough journey.

“I really don’t think the general public understands the impact epilepsy has on a child and his family. Its effects are multifaceted and extensive. Our team’s goal is to reduce or eliminate our patients’ seizures, helping improve their quality of life,” explains Dr. Mower, who placed Ian on a series of medications.

The medications reduced Ian’s seizures, but did not control them. Dr. Mower was concerned about the seizures affecting Ian’s development, and presented his case to the epilepsy team.  The multidisciplinary team agreed Ian was a candidate for epilepsy surgery. For children who fail at least two medications, surgery may be considered early in treatment versus as a last resort. Surgery can result in an improvement in seizure control, quality of life, and prevent permanent brain damage. Ian’s surgery was going to be performed by CHOC neurosurgeon Dr. Joffre Olaya.

epilepsy surgery
Ian recovering from epilepsy surgery at CHOC.

While the thought of surgery was frightening to Lisa and her husband, they were confident in the team and comforted to know their son was going to benefit from innovative technology, like the ROSA™ Robot. Considered one of the most advanced robotized surgical assistants, ROSA includes a computer system and a robotic arm. The computer system offers 3D brain mapping to aid surgeons in locating the exact areas they need to reach and planning the best surgical paths. The robotic arm is a minimally invasive surgical tool that improves accuracy and significantly reduces surgery/anesthesia time.

Dr. Olaya used ROSA to accurately place electrodes in the area of Ian’s brain suspected to be the source of his seizures. By using the robot, Dr. Olaya avoided performing a craniotomy (surgery to cut into the skull, removing a section called a bone flap, to access the brain).

“ROSA is an amazing tool that yields many benefits for our patients, including less time under anesthesia in the operating room. It reduces blood loss and risk of infections. Patients tend to recover faster than they would if they had craniotomy,” says Dr. Olaya.

Lisa was amazed at the outcome. “I couldn’t believe how great Ian looked after the placements of the electrodes with ROSA. He wasn’t in any pain, there was no swelling. It was wonderful!”

She and her husband were also amazed at how well Ian did following his epilepsy surgery.

“We got our boy back,” says Lisa. “There were no more side effects from medication and, more importantly, no more seizures!  He started developing again and doing all the things a child his age should do.”

epilepsy surgery
After epilepsy surgery, Ian has been able to do things other kids his age are doing, like riding scooters.

Ian’s care team isn’t surprised by his recovery.

“Children are resilient, and their brains are no different. In fact, the plasticity of a young brain allows it to adapt to changes and heal more easily than an adult brain,” explains Dr. Mower.

Learning to ride a bike and swim were among the first of many milestones Ian quickly reached following surgery. He enjoys playing with his younger brother and his friends. And, whether inspired by his experience with ROSA or not, Ian loves robots.

Read stories:

Son’s Epilepsy Journey Inspires Mom to Help Others

The spread inside a conference room in CHOC Children’s neuroscience unit would be a welcomed sight for any parent: a box of glistening bagels, jugs of steaming coffee, and a warm smile from Kathy Lear.

Whether it’s by offering nourishment or a kind word of encouragement, Kathy stands ready to help a fellow parent of a child contending with epilepsy or other complications.

“We’re trying to do these breakfasts once a week,” she says. “It’s nice to help out.”

After all, it’s a journey that Kathy’s intimately familiar with.

After her son Matthew’s typical birth and toddlerhood, signs that something was amiss appeared in kindergarten. Suddenly, Matthew would start ignoring his parents. Thinking it odd, they made an appointment with the pediatrician.

But before the appointment rolled around, Matthew’s school called one afternoon. Administrators were concerned that he had experienced an absence seizure – a type wherein someone suddenly stares off into space.

At CHOC, an electroencephalogram confirmed that Matthew was indeed d having seizures. He was diagnosed with epilepsy on Halloween 2008, just days before his sixth birthday.

Matthew began care under Dr. Mary Zupanc, director of CHOC’s pediatric comprehensive epilepsy program. The years that followed would be marked by a series of attempts to control Matthew’s seizures, including antiepileptic medication, a special diet and two epilepsy surgeries.

The epilepsy surgeries were palliative procedures, which would partially control the seizures, but not cure the epilepsy or stop all of the seizures. Inevitably, the seizures, although less frequent and less severe, would start again.

Ultimately, Dr. Zupanc recommended implantation of a new type of vagus nerve stimulation device, which sends electrical signals to Matthew’s brain to stop the seizures. Implanted by CHOC neurosurgeon Dr. Joffre Olaya, the device has brought relief to Matthew and his family.

“It disrupts any seizures that might be starting,” Kathy says. “It’s caused a dramatic increase in his ability to respond to us. It has made just a world of difference.”

epilepsy

Matthew now has quarterly visits to the hospital. Now 13, Matthew is doing well, attending special education classes in middle school, and participating in several sports through a recreational league.

“He’ll never be off his medication, but we do hope that we might have seizure freedom again,” Kathy says. “He’ll never not have to deal with epilepsy.”

Between his surgeries, seizure monitoring and other visits, Matthew’s time in the hospital totaled at least six months, Kathy estimated. And without the support of their family, friends and community, the journey would have been nearly impossible for the Lear family, Kathy says.

“We as a family couldn’t have done it without the support of our family and friends,” she says. “It really does take a village. Between bringing us meals, visiting in the hospital, coming back and forth to sports practices – just little things like that really helped.”

That support network has also helped give Kathy the time to make it a priority to help others who are also dealing with epilepsy.

She’s a parent representative on one of CHOC’s clinical practice councils, which help evaluate and improve patient care. Kathy also serves on CHOC’s Family Advisory Council, a diverse group of adult family members who meet regularly to provide input on decisions, initiatives and discussions.

That role brought her to the recent breakfast in the neuroscience unit. Made possible by a grant, the spread is hosted by CHOC’s Patient- and Family-Centered Care team, which supports CHOC’s philosophy that patients and families are part of the care team.

The breakfasts are designed to offer support and comfort to families who find themselves on the unit for days at a time, often while their children are undergoing testing or experiencing other complications.

“Sometimes it’s as simple as parents asking where they can find toothpaste. I tell them that we can definitely help,” Kathy says with a laugh.

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Children and Tics: What Parents Should Know

People of all ages can experience repeated involuntary movements called tics, but they are most prevalent in children. Nearly one quarter of all children experience this genetic disorder that becomes most visible in school-aged children.

Common motor and vocal tics include:

  • Blinking
  • Shoulder shrugs
  • Neck twitches
  • Throat clearing or sniffling
  • Coprolalia, involuntary and repetitively utters obscene words

All tics tend to wax and wane in severity and frequency. The tics themselves can also change over time, says Dr. Mary Zupanc, chair of neurology and the director of CHOC Children’s pediatric comprehensive epilepsy program. This means that a child with simple childhood tic disorder can have repetitive eye blinking during one point in time, and during another phase, can have irregular but repetitive shoulder shrugging, and later, intermittent head twitching.

children tics
Dr. Mary Zupanc

Childhood tic disorders are very common in young children. It is a “spectrum disorder,”  with some children having only intermittent, isolated tics, and having multiple motor and vocal tics. If these tics last greater than one year, the diagnosis is Tourette’s syndrome, which is simply a more severe form of childhood tic disorder.

Preserving Self Esteem

“Tics alone will not hurt a child, but we certainly want to preserve a child’s self-esteem, and not allow them to be embarrassed by their tics. Vocals tics can be especially problematic in the school setting,” says Dr. Zupanc. “Often times, the biggest treatment of tics is reassurance to the child and family, in addition to providing education on when it is appropriate to suppress a tic or not. Family and child counseling are often important, so that the child maintains his or her self-confidence.”

Treatment Options

Medication may be recommended in some severe cases. Pediatric psychologists who have training in behavioral modification can help children learn to suppress a specific tic.

Tics often disappear around the time of adolescence in many cases of childhood tic disorders and Tourette’s syndrome, although there may be concurrent co-occurring health challenges that are more problematic, Dr. Zupanc says. Learning disabilities, attention deficit hyperactivity disorder, obsessive compulsive disorder, and oppositional defiant disorder frequently appear in tandem with either childhood tic disorder or Tourette’s syndrome.  These co-morbidities may require medications for effective treatment.

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Meet Dr. Anjalee Warrier Galion

CHOC Children’s wants its patients and families to get to know its specialists. Today, meet Dr. Anjalee Warrier Galion, a pediatric neurologist and sleep specialist.

Dr. Anjalee Warrier Galion
Dr. Anjalee Warrier Galion

Q: What is your education and training?
A: I attended the University of Medicine and Dentistry of New Jersey- New Jersey Medical School, and completed my residency in pediatrics at University of San Francisco, Fresno.  During my academic year, I worked for Walter Reed Army Institute of Research to help identify a vaccine for malaria. My second day was September 11, 2011, and it was an amazing, humbling, and scary experience to be a part of the military for this day. My first fellowship was in pediatric neurology at the University of California, Irvine (UCI), and my second fellowship was in sleep medicine at the University of California Los Angeles- Cedars Sinai Sleep Medicine Fellowship.

Q: What are your administrative appointments?
A: Assistant clinical professor at UCI, assistant program director for the UCI child neurology residency program, chair of the junior faculty leadership council, and co-chair of the sleep workgroup for the National Autism Treatment Network.

Q: What are your special clinical interests?
A: Sleep disorders in children with neurologic diseases such as epilepsy and autism, as well as sleep and cognition.

Q: Are you involved in any current research?

A: Evaluation of efficacy of specific sedative hypnotics in children with Autism spectrum disorder, and Identification of sleep architecture and pathology in children with epilepsy.

Q: How long have you been on staff at CHOC?
A: Four years.

Q: What are some new programs or developments within your specialty?
A: CHOC is one of the few, if only, hospitals in the country doing combined long-term video EEG as well as polysomnography (sleep study).  This allows us a very unique opportunity to look at the brain activity and pathology in sleep. Multidisciplinary sleep clinics involving psychology and pulmonology are also unique. Also, identification and treatment of a variety of pediatric sleep disorders including all types of insomnia, narcolepsy and parasomnias, such as sleepwalking, sleep talking and night terrors.

Q: What are your most common diagnoses?
A: Insomnia, narcolepsy, sleepwalking (or somnambulism).

Q: What would you most like patients and families to know about you or your division at CHOC?
A: We treat all types of sleep-related disorders and are providing state-of-the-art care for children with sleep disorders. It is estimated that more than 30 percent of children have sleep-related disorders, and improvement in sleep is essential for learning and cognition. Research suggests improved sleep supports optimal athletic performance as well. If there is any concern for a sleep-related disorder we are happy to help evaluate these children.

Q:  What inspires you most about the care being delivered here at CHOC?
A: We treat every child with the highest level of care and the physicians genuinely care for the patients and our community.

Q: Why did you decide to become a doctor?
A: I had been interested in neuroscience since I was a Howard Hughes fellow at the University of Maryland, having done work in spinal cord regeneration. I heard a talk in my first year of medical school about pediatric neurology and haven’t looked back since.

Q: If you weren’t a physician, what would you be and why?
A: If I was not a physician I would mostly likely be a PhD working in the field of neurobiology and sleep medicine. Both my parents were PhDs and I grew up hearing about fascinating advances in the world of science, so I have been drawn to science and research from a young age. For quite a few years I was strongly considering becoming a professional flute player. I was fortunate enough to travel through Italy with my youth symphony and performed around the country in orchestras, but science drew me in by the time I was in college.

Q: What are your hobbies/interests outside of work?
A: I enjoy hosting parties and events for family and friends. Our family enjoys traveling and spending time together.

Q: What have you learned from your patients?
A: The best part about working with pediatric patients is that you are constantly reminded to enjoy life and be grateful for every day. The smallest things can make a child happy, like playing with a light-up toy or seeing bubbles, and it is a great reminder to take pleasure in all the simple things around us every day.

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Meet Dr. Andrew Mower

CHOC Children’s wants its patients and families to get to know its specialists. Today, meet Dr. Andrew Mower, a pediatric neurologist. Dr. Mower attended medical school at St. George’s University School of Medicine, completed a residency in pediatrics at Maimonides Medical Center, and another residency in child neurology State University of New York Downstate. He completed a fellowship in clinical neurophysiology at Columbia University. Dr. Mower sits on CHOC’s quality improvement committee and is part of CHOC’s ancillary and diagnostic services. He has been on staff at CHOC for two years.

Dr.Andrew_Mower_0699_2

Q: What are your special clinical interests?
A: Epilepsy and epilepsy surgery

Q: What are some new programs or developments within your specialty?
A: Stereotactic EEG for epilepsy surgery

Q: What are your most common diagnoses?
A: Epilepsy and headaches

Q: What would you most like community/referring providers to know about you or your division at CHOC?
A: We take on the most challenging epilepsy cases to search for cures, and, if not, at least an improvement in the child and family’s quality of life. We work together as a team to use all of our expertise to help the child and family.

Q:  What inspires you most about the care being delivered here at CHOC?
A: I feel that we offer families hope when hope had been abandoned before.

Q: Why did you decide to become a doctor?
A: I decided to become a doctor to help people in need. I chose neurology as my specialty because I had a fascination with the nervous system and wanted to break misperceptions that little can be done for patients with neurological problems.

Q: If you weren’t a physician, what would you be and why?
A: Farmer. I love the accomplishment of creating a garden and growing produce.

Q: What are your hobbies/interests outside of work?
A: Gardening, running and hiking

Q: What was the funniest thing a patient told you?
A: “I don’t eat apples, doctor.”

“Why?”

“Because they keep the doctor away, and I like you, Dr. Mower.”

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Test your Brain IQ with this Brain Awareness Week Quiz

At what point does a headache become cause for concern? How rapidly and when does your child’s brain develop? The brain is a complex organ, and sometimes, it produces almost as many questions and it does thoughts (which is about 70,000 per day). To celebrate Brain Awareness Week, take this fun quiz to see how much you know about the brain:

  1. True or False- If kids and teens have headaches, they should automatically be referred to a specialist.
  2. True or False- A newborn’s brain is smaller than an adult’s brain.
  3. True or False- The most active time for brain development is during puberty, when adolescents are rapidly growing and changing.
  4. True or False- The brain is the most complex organ in the human body.
Dr. Mary Zupanc
Dr. Mary Zupanc, CHOC’s neurology division chair, and director of CHOC’s comprehensive epilepsy program.
  1. False- Headaches can occur for a number of reasons and are usually not a sign of a serious medical condition. Before seeking a referral to a neurologist from your pediatrician, first try:
    • Getting enough sleep
    • Drinking plenty of water
    • Eating regular, well-balanced meals
    • Exercising regularly
    • Stress relieving methods such as yoga or meditation
  2. True- At birth, a baby’s brain is one-quarter of the size of their mom or dad’s brain. It will double in size by their first birthday, and eventually weigh three pounds when it’s full grown.
  3. False- The period between birth and two years old is a very active time for brain development. Until puberty, brain development will use up almost half of the body’s daily energy intake. However, brains won’t fully develop until closer to age 25.
  4. True- The brain powers the nervous system, which affects and is affected by all the other systems in your body (cardiovascular, endocrine, gastrointestinal, and immune systems). It has 100 billion neurons- cells known as the gray matter which process information.

Learn more about the CHOC Children’s Neuroscience Institute, where pediatric specialists are providing expert care at the only pediatric neuroscience hospital in the region.

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Preventing and Treating Concussions

CHOC Children’s multidisciplinary team of concussion experts can help prevent and treat concussions, as well as help patients ease back in to school and sports. Careful supervision is essential for young persons with concussions, since their brains are still developing.

In this episode of CHOC Radio, Dr. Sharief Taraman, a pediatric neurologist, Dr. Jonathan Minor, a sports medicine specialist, Jenn Ahlswede, a speech language pathologist, and Mollee Oh, a physical therapist and rehabilitation supervisor, discuss:

  • SCAT3, an assessment tool parents and coaches can use immediately after an incident occurs
  • The film “Concussion,” and how concussions affect kids and teens differently than adults
  • Recommendations for cognizant and physical rest periods after sustaining a concussion

Hear more from CHOC experts in this podcast.

CHOC Radio theme music by Pat Jacobs.

Kara’s Story: A Journey with Epilepsy

Heidi Sexton knew her young epileptic daughter, Kara, needed more help. Anti-seizure medications didn’t help, hospital visits were frequent, and seizures and tantrums continued.

“It was time,” Heidi recalled. “I went in to the next doctor’s appointment with my questions: What else can we try? This isn’t working.”

Dr. Mary Zupanc, director of CHOC Children’s comprehensive epilepsy program, offered her recommendation: Kara needs brain surgery.

A little girl’s long road

Though no doubt a staggering consideration, brain surgery would be the next landmark on a long medical history that belied Kara’s short three years of life.

At just 13 months old, she underwent emergency brain surgery after her frontal lobe hemorrhaged, caused by a previously undiscovered vascular malformation. The hemorrhage in Kara’s brain led to right-side hemiplegia, leaving her no use of her right hand and limited the use her right leg.

Kara underwent physical therapy and began walking at age 2. Life was relatively normal for the Sexton family until just after Kara’s third birthday, when she began acting strangely.

Kara’s body would stiffen, she’d fall down and stare off into space, Heidi recalled. It wasn’t until a visit to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital that the Sextons would learn Kara was having seizures.

At the CHOC Children’s Neuroscience Institute, Kara underwent an electroencephalogram, or EEG, a test that monitors for electrical activity in the brain. Next, she spent six days undergoing long-term video EEG monitoring. From there, Dr. Zupanc, also CHOC’s neurology division chair, made an official diagnosis of epilepsy and prescribed an anti-epileptic medication.

Exploring other options

Nonetheless, Kara’s seizures continued. Kara’s three older siblings were acutely aware of their sister’s disorder, daily counting Kara’s seizures and agonizing over each hospital visit. The family began to placate Kara in hopes of staving off outbursts and tantrums, Heidi said.

“Kara had between two and four seizures a day,” she said. “It really messed with her behaviorally. She’s a lovely kid, but she suffered serious temper tantrums. It was physically and emotionally exhausting.”

A second six-day monitoring session led Dr. Zupanc to change Kara’s medication and, as a precaution, begin evaluating her as a candidate for epilepsy brain surgery.

Further tests and scans revealed that the left hemisphere of Kara’s brain was significantly injured and atrophied – likely related to her earlier hemorrhage. In addition, Kara’s new anti-epileptic medication wasn’t working.

Dr. Zupanc concluded that the next step was a hemispherectomy, a surgical procedure in which one side of the brain is removed or disconnected.

Kara

“On scans, Kara’s hemisphere was completely white,” Heidi said. “The only thing her left hemisphere was doing was causing seizures. There was no question.”

A change of course

Nearly 11 months after the seizures first surfaced, Kara underwent surgery at CHOC to remove a portion of her brain’s left side, and disconnect the remaining portion from the right hemisphere. Performed by neurosurgeon Dr. Joffre Olaya, the procedure lasted six hours.

After 16 days recovering in the hospital’s pediatric intensive care unit, Kara went home just after her fourth birthday.

Much to her parents’ and siblings’ relief, Kara hasn’t had a seizure since her surgery eight months ago. Kara still relies on an anti-epileptic medication, but she may be able to stop taking it completely or use a lower dose of medication soon if her progress continues.

Though considering a second brain surgery was daunting for the Sextons, Heidi and her husband knew the procedure was the right choice to help their daughter.

“I looked at it in a sense of quality of life for Kara,” Heidi said. “Hopefully now she’ll be able to drive one day. Continued seizures would have impaired her cognitively forever, and I didn’t want that.”

Though she still requires extensive care, Kara is doing well physically and emotionally and is looking forward to preschool.

Kara isn’t fully aware of her journey in the last year, but she understands the meaning of the scar on her head just above her ear.

“She knows now that she doesn’t have seizures and Dr. Olaya and Dr. Zupanc fixed her,” Heidi said.

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