A Teenager With Epilepsy: Stephen’s Story

In Recognition of Epilepsy Awareness Month, we spoke with a teenager with the condition to learn more about life with epilepsy, and what advice he would offer a newly diagnosed patient.

Stephen Moore

Stephen Moore swallows eight pills daily, avoids heights and contact sports, and pays close attention to his body’s cues. This routine, combined with the care of CHOC specialists, has helped keep the 15-year-old seizure-free since his epilepsy diagnosis three years ago.

Stephen is one of 2.5 million Americans with epilepsy, a neurological condition wherein abnormal electrical activity in the brain can cause seizures, convulsions or sensory disturbances.

He was diagnosed at age 12 after experiencing a seizure one Sunday afternoon while watching a football game on television with his parents.

“I got up, took a step forward and collapsed on the ground,” he says. “My parents wanted to know if I was alright and what was going on. I could hear them, but I couldn’t respond. It was like the muscles in my jaw just weren’t there and I couldn’t move them.”

An ultimate epilepsy diagnosis and subsequent care plan was at first confusing and distressing for Stephen.

“I got the feeling that all kids who are newly diagnosed get,” he says. “Your heart sinks. You hear, ‘You can’t do this, you can’t do that,’ and it’s like, ‘What am I supposed to do?’”

For Stephen, the “can’ts” include activities that involve heights, like rock climbing or a pool’s high-dive. He can’t swim alone and must always wear a helmet while bicycling – good advice for everyone – and he must also pass on contact sports, like football.

For the then 12-year-old Stephen, these restrictions at first seemed insurmountable.

“It was very depressing,” he said. “But I’ve gotten through it. It took some time, about two months after I was diagnosed.”

Now, three years later, Stephen has mostly made peace with his condition, which could become life-long. His advice to newly diagnosed patients would be to listen to their bodies’ needs and talk to people about the condition. These measures help him maintain both physical and emotional health.

“At first, I was afraid to talk to anyone,” he said. “I don’ t know if I didn’t want people to know or I just didn’t want to think about it myself, but I learned that you definitely need to talk about it, otherwise you’ll bottle that up.”

A freshman in high school, Stephen is enrolled in honors and AP courses and particularly enjoys Spanish class. His teachers and a few friends know about his condition, but he doesn’t let epilepsy and the threat of another seizure rule his life.

“I don’t worry about that,” he says. “I know I have it and seizures can happen, but I don’t think about it because it does me no favors.”

Learn more about CHOC’s comprehensive epilepsy program.

Innovative Cancer Treatment: Abbey’s Story

Abbey and Jaime Serna, phlebotomist at CHOC hospital.
Abbey Schemmer and Jaime Serna, phlebotomist at CHOC Hospital.

While many teenaged girls might balk at wearing a medical device on their shaved heads 18 hours a day, Abbey Schemmer didn’t blink an eye.

After all, the 16-year-old CHOC patient was fighting for her life.

Following the diagnosis of two brain tumors – including a rare, extremely aggressive type called glioblastoma multiforme – and several surgeries, Abbey and her family turned to a new technique to halt the tumors’ growth: tumor treating fields, or TTF.

TTF uses electromagnetic forces to prevent this type of tumor from dividing and growing. TTF was only recently approved for adult use, and as a pediatric patient, Abbey received special clearance to use ahelmet-like device that administers the treatment.

Worn continuously for 18 hours a day, the helmet places electrodes directly on Abbey’s scalp, which requires her to shave her head every few days so that the helmet’s electrodes directly touch her skin. Abbey wears the device’s power source in a backpack.

“This is not an easy treatment,” said Dr. Violet Shen, Abbey’s oncologist at CHOC. “But she was willing to do that and is wearing her helmet and head dressings and still going on with her life.”

Following about nine months of TTF treatment and chemotherapy, Abbey’s tumor shows no signs of major progression, Dr. Shen said.

The progress is a marked departure from expectations when Abbey was diagnosed in early 2013 following complaints of nausea, headaches and lethargy.

“We thought we had a sick little girl,” said Ken, Abbey’s father. “We were thinking she wouldn’t live for very long.”

Abbey immediately underwent surgery to remove the tumor, followed by chemotherapy and radiation. She stayed in good spirits and continued with school, but after she experienced seizures in summer 2014, it was clear the glioblastoma had grown back.

After another surgery to remove Abbey’s right frontal lobe, the family explored other methods to curb the tumor’s growth, and ultimately turned to TTF.

“It was cool that it could help my cancer,” Abbey said.

In the months following, Abbey has continued in school and she’s looking forward to beginning driver’s education. Her schoolmates have rallied around her, and taken an interest in her unique treatment, Abbey said. “People ask me questions,” she said. “They think it’s fun because my backpack generates heat. They ask, ‘Can I see your heater?’”

If this treatment continues to work, Abbey could feasibly continue to wear the helmet for the rest of her life, Ken says. For now, her family is taking the treatment one day at a time.

“It’s been working,” Dr. Shen said. “Very few people survive with this tumor for six months, let alone a year. Abby’s done well. She’s very vigorous and still attending school. Abbey’s definitely a fighter.”

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Former CHOC patient, Brant Whiting Fulfills Dream of Playing Professional Baseball

CHOC Children'sFor Lisa and Mikel Whiting, CHOC not only saved their son’s life, but solved an eight-year mystery — allowing him to pursue dreams once thought unattainable. From infancy, Brant Whiting suffered severe asthma that caused asthma attacks every single night of his life. Brant describes the experience as trying to breathe through a straw.

One night, at age 8, Brant stopped breathing altogether and was rushed to a local hospital. Doctors said that Brant’s labs “were incompatible with life” and he might not survive the trip to CHOC in the transport ambulance. But he did, and Dr. Nick Anas, CHOC’s pediatrician-in-chief and his team worked for five hours to keep Brant alive. They succeeded. After six days in a medically induced coma on life support, Brant awoke — and survived. brant dodgers logo

In fact, not only did he survive, CHOC doctors were able to determine the underlying cause of Brant’s asthma — gastric reflux. He underwent a fundoplication procedure at CHOC, eliminating about 85 percent of his asthma symptoms. This correct diagnosis gave Brant the chance to pursue his dreams: playing professional baseball. He played catcher on Stanford University’s baseball team for four years before being drafted by the Los Angeles Dodgers. A precious life saved… and a dream fulfilled.

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Alicia’s story: Repairing a right-sided congenital diaphragmatic hernia

CHOC Surgical NICUAlicia was born at full term, beautiful with 10 fingers, 10 toes and a life-threatening defect buried inside her tiny chest.

She had a congenital diaphragmatic hernia (CDH), a condition where a hole in the diaphragm allows abdominal organs to move into the chest. And this case was especially serious.

Though less common, hernias on the body’s right side are more dangerous because the liver, a larger organ, can move into the chest cavity, impairing lung development, impeding blood vessel functionality and ultimately causing pulmonary hypertension, says Dr. Mustafa Kabeer, Alicia’s surgeon at CHOC.

Just 20 percent of CDH cases are right-sided, and about 40-50 percent of babies nationwide survive their treatment; conversely, more common left-sided hernias yield about an 80-90 percent survival rate, Dr. Kabeer says.

Prenatal meetings remain key

After the diagnosis, Alicia’s mother Marlen began meeting with Dr. Kabeer and other specialists to prepare for her baby’s birth and treatment afterward.

“It helped because we had the prenatal meeting,” Dr. Kabeer says. “That way, parents can connect a face to a particular job in the care of their baby. They are educated and know what to expect during treatment.”

Just hours after her birth, Alicia’s condition began dramatically deteriorating. A transfer to CHOC was necessary, and Marlen and her husband were warned that Alicia would not likely survive the 2-mile ambulance ride.

But she made it, and quickly began treatment under a life-saving device called extracorporeal membrane oxygenation (ECMO) to help her compromised lungs. First pioneered at CHOC about 40 years ago, ECMO is a heart and lung bypass machine that can be used to rest a failing heart or lungs, providing complete support until the organs recover.

About a week later, Dr. Kabeer performed the procedure to repair the diaphragmatic hernia, all while Alicia remained on ECMO with substantially high risks of uncontrollable bleeding due to the blood thinners needed while on the treatment.

Alicia sailed through the surgery with little bleeding, but within the next day or so, Dr. Kabeer needed to perform two separate procedures to relieve pressure building inside her abdomen that compromised blood flow to the lower half of her body.

Two weeks old and five surgeries

Shortly after this surgery, Alicia began to bleed. During the next four days, she had ongoing bleeding and during the fourth day, lost about 1,500 mL of blood, or about six times her normal blood volume. Hospital staff kept her stable, and Alicia was taken off of ECMO. Two days later, Dr. Kabeer performed a final surgery to close her abdomen, which had been left open all of this time to decrease pressure.

“All of those surgeries were very high-risk surgeries,” Marlen says. “There was a very high chance she wouldn’t make it, but she did perfectly.”

Throughout the entire process, Dr. Kabeer communicated with Marlen and Omar about the risks of the surgeries. And like every other time Alicia’s parents were cautioned about her survival, the tiny infant fought back.

Baby Alicia today.
Baby Alicia a few months after her surgeries.

“Even though it’s a difficult subject, and a complicated, emotional and anxiety-provoking issue, we want parents to understand the problem their child is facing and that we’re trying to help them and their baby overcome it,” Dr. Kabeer says. “That connection and rapport are very important and it all stems from honesty.”

“It involved a very transparent discussion,” Dr. Kabeer said. “I laid out for them all of the issues and all of my concerns, and made them see that we’re going to do our best and face these challenges together. I want to give parents reassurance and security to know that not only are they in a good place, but they’re with staff who are well trained.”

Coordinated care in the Surgical NICU

Between her five surgeries and afterward, Alicia was closely monitored inside CHOC’s Surgical Neonatal Intensive Care Unit, a special part of the hospital’s main NICU dedicated to the care of babies who need surgery.

In the unit, the team cares for patients jointly, discussing the cases of children like Alicia as a group and forming a treatment plan that often calls for the expertise of other specialties at CHOC.

After several months in the Surgical NICU, Alicia went home with her family. Today, she is a happy, charismatic four-year-old.

alicia-today-beach
Today, Alicia is a thriving four-year-old.

“Alicia’s case reinforces the fact that babies are extremely resilient,” Dr. Kabeer says. “It’s amazing that she tolerated all of this. Every patient is unique and this is a perfect example of why we should give them every chance possible.”

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Twelve-year-old becomes first CHOC patient to receive life-saving device

Erin Greaves and her son, Sean.
Sean and his mom, Erin.

Erin Greaves woke to the sound of her son’s gasp and the dogs barking. The pediatric nurse raced to 12-year-old Sean’s room and immediately began performing CPR. When paramedics arrived, Sean was experiencing ventricular fibrillation, a serious heart rhythm problem that is the most common cause of sudden cardiac death. He was defibrillated twice before being taken to a nearby hospital, and subsequently transported to CHOC.

As a patient in CHOC’s pediatric intensive care unit, Sean underwent a series of tests, including a cardiac MRI, cardiac catheterization, exercise tests and genetic testing. Results revealed no structural damage to his heart and no underlying condition. Sean’s ventricular fibrillation was ruled idiopathic, which means no known cause.

Sean’s cardiologist, Dr. Anthony McCanta, has specialized expertise in the treatment of irregular heart rhythms and presented a unique option to Sean and Erin. Physicians primarily use implantable cardioverter defibrillators (ICDs) to treat the most serious heart rhythm problems. The device constantly tracks the patient’s heart rhythm and delivers an electric shock to the heart when it beats abnormally fast. Traditional defibrillators require electrical conductor wires, or leads, to be inserted into the heart through a vein in the upper chest.

Sean and his mom chose a newer treatment option called the Subcutaneous Implantable Cardioverter Defibrillator (S-ICD). The 12-year-old became the first CHOC patient to receive the device.

“The S-ICD is not as invasive as other ICDs since the sensing and defibrillating electrode is implanted directly under the skin of the chest wall and it is connected to a generator in the axilla, or lower armpit area. No component of the device is inside the veins, heart, or even the inner chest itself. Consequently, there are fewer future complications of leads in the vein and heart, and a much faster recovery time — tangible benefits for young active children,” explains Dr. McCanta.

Just one week after Sean’s frightening ordeal, he was back at home in excellent condition.

“Even though I am a pediatric nurse, I am a mom first. I have tremendous gratitude for Dr. McCanta and the CHOC team who took such excellent care of Sean. He is back at home, playing with the dogs and his friends, and looking forward to starting middle school in the fall,” says Erin.

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