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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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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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.

Read other stories about CHOC patients:

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  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

 

Thank you, Parents and Families!

As I help CHOC Children’s celebrate its 50th anniversary, the overwhelming feeling for me and many I’ve met around the hospital is gratitude.

For me, I’m grateful for the care I received when I fell out of that tree in 1964 and the friends I’ve made ever since. So many patients I’ve met are thankful for the bright futures and milestones they’ve achieved thanks to CHOC’s care.

And CHOC’s physicians are no exception. They’re grateful for the trust that parents and families instill in them each and every day. In this video, CHOC physicians express their gratitude.