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’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 Hospital that the Sextons would learn Kara was having seizures.

At the CHOC 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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Keeping A Close Watch

annual-report-2013-close-watch
annual-report-2013-close-watch-2By age 4, Grace Rogers was riding a bicycle without training wheels. She was roller-blading and skateboarding—an active, spunky kid growing up in Buena Park with an older sister and little brother.

But her mother, Debbie Rogers, would notice that at times, Grace would appear to be off balance. And she thought it odd that ever since Grace was 2, she slept excessively—12 hours a night, plus an afternoon nap.

“She was so coordinated, but then she would trip or fall,” Debbie says. “And all that sleeping. It didn’t make any sense.”

It wasn’t until she was 6, when Grace’s kindergarten teacher noticed the same things—as well as Grace appearing inattentive for brief spells—that Debbie and her daughter began a journey at CHOC that continues to this day.

That journey has brought Grace and her mother to a new unit at CHOC at Mission Hospital that specializes in the evaluation and treatment of the disorder afflicting Grace: epilepsy.

A program like no other

Opened in late 2012, the four-bed inpatient epilepsy monitoring unit (EMU) at CHOC at Mission Hospital augments the eight-bed inpatient EMU in Orange.

Developed and run by world-renowned pediatric epileptologist Mary Zupanc, M.D., director of the Comprehensive Epilepsy Program and CHOC Specialists division chief of neurology, the epilepsy program at CHOC has been designated as Level 4 by the National Association of Epilepsy Centers, making it the only Level 4 program in the state run by a free-standing children’s hospital.

The new EMU at CHOC at Mission Hospital offers quiet, private rooms for patients like Grace to undergo intensive neuro-diagnostics monitoring that includes long-term video EEG (electroencephalogram) recording to help CHOC specialists monitor patients around the clock to pinpoint exactly where and why the child is having seizures. CT scans and MRIs also are used.

According to Dr. Zupanc, the EMU at CHOC at Mission Hospital is for patients with lower-acuity epilepsy whose disorders generally are under control. Patients with more intractable epilepsy are treated at CHOC’s main campus in Orange, where they also undergo surgery if medication fails to control their seizures.

The EMUs provide the highest level of medical and surgical evaluation and treatment for patients with complex epilepsy, says Dr. Zupanc.

Finding an answer

CHOC’s epilepsy program team consists of clinical and support staff, including epileptologists, neurosurgeons, neurologists, neuropsychologists, neuroradiologists, social workers, physical therapists, dietitians, nurses and nurse practitioners, child life specialists and case managers.

“Epilepsy provides multiple challenges for families,” says Dr. Zupanc. “And nobody wants to talk about epilepsy, because unfortunately there’s still a lot of stigma attached to the disorder.”

Epilepsy is a brain disorder in which a person, over time, has repeated seizures, or episodes of disturbed brain activity that cause changes in attention or behavior.  Although much more common than a disorder like ALS (Lou Gehrig’s disease), which affects nerve cells in the brain and spinal cord that control voluntary muscle movement, epilepsy has yet to be a primary focus of extensive attention and research, says Dr. Zupanc.

The epilepsy specialists at CHOC are determined to help change that.

Grace was diagnosed with so-called absence seizures, which usually last less than 30 seconds and start and end quickly. She was unaware of her seizures—which is common. Sometimes episodes of absence seizures are mistaken for inattentiveness, as was the case with Grace.  Sensing something wasn’t right, her kindergarten teacher called Grace’s mom.

“That’s when I knew I wasn’t imagining things—that I wasn’t crazy,” Debbie says.

Grace ended up in the care of the Neuroscience Institute in June 2011. An EEG detected abnormal activity in Grace’s brain, and she was put on medication.

The medication controlled her seizures, but Grace still was sleeping an abnormal amount, which is common for people with epilepsy. CHOC neurologist, Anjalee Galion, M.D., conducted a sleep study in Orange.

A positive place

Grace was among the first patients to stay in the new EMU at CHOC at Mission Hospital when admitted in January 2013.

Hospital volunteers kept Grace busy with crafts and activities. She even made a banana split. Therapy dogs also regularly visited her. A television and various electronic devices helped Grace pass the time.

“She would love to order food,” Debbie says. “with the room service and all the fun activities, it was almost like a hotel for kids”

CHOC epilepsy specialists still are working to determine what’s happening inside Grace’s brain. Recent tests have detected abnormal brain activity but no seizures, though Grace continues to sleep as much as 16 hours a day. Another sleep study at the EMU at CHOC at Mission Hospital is planned.

Says Debbie: “We’re going to keep digging. The doctors say that Grace is a unique patient. She doesn’t fit into a pretty box.”

But it sure is a gift, Debbie adds, that Grace, now 7, is being treated at CHOC.

“It’s been wonderful.”

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CHOC Mom, Co-Founder of Epilepsy Support Network of OC Offers Helpful Tips

In honor of National Epilepsy Awareness Month (November), Janna Moore, whose daughter is being treated for epilepsy at CHOC and who also co-founded the Epilepsy Support Network of Orange County, provided the following guest post. These tips are intended to help parents cope with the diagnosis of epilepsy and ensure their children get the best possible treatment and experience the best possible outcomes.  This list was compiled from a survey Janna completed with 70 parents, who have more than 275 years of epilepsy experience, combined.

Attention Parents of Children with Epilepsy: Here’s a “Top 10” List You Won’t Want to Miss!

1) Find an experienced pediatric epileptologist at a pediatric epilepsy center.

2) Try and video/digitally record your child’s seizure to show the doctor at your child’s appointment.

3) Get an accurate epilepsy diagnosis detailing the seizure type or syndrome to ensure the most effective treatment for your child.

4) Join a local epilepsy advocacy organization, like Epilepsy Support Network of Orange County, to connect – through educational and emotional support groups – with other parents who have many years of experience caring for their children with epilepsy.

5) Join an on-line support group to learn as much as you can about your child’s seizure type.

6) Start a medical notebook: track/record seizures – dates, times, triggers, in addition to how it started and what it looked like. Details are very important for the doctor.  Get yourself a calender, a log sheet, or sign onto “Seizure Tracker”.

7) Ask your child’s doctor about the emergency epilepsy medication, Diastat, if your child’s seizures last longer than 5 minutes or cluster.  Call 911 if child is experiencing 1st time seizure or if a child with epilepsy has a seizure lasting longer than 5 minutes.

8) Educate yourself about your child’s specific seizure type once you get an accurate diagnosis.

9) Train your family members, child care providers and teachers on seizure recognition and first aid so your child is safe in any environment. You can schedule this presentation through Epilepsy Support Network.

10) Keep an eye on cognitive abilities and report to the doctor if you see a decline, which could be seizure -related.  Watch for behavioral changes, as well.  Be sure to address cognitive, behavioral, social issues if they arise – the sooner, the better.

Janna Moore’s daughter was diagnosed with epilepsy when she was 3 ½ years old.  She and her family experienced several challenges along the way, until arriving at CHOC, where she was seen by Dr. Mary Zupanc, director of CHOC’s Comprehensive Epilepsy Program.  Janna is a co-founder of the Epilepsy Support Network of Orange County, for which she currently serves as director of programs and services. 

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