Today, Cook Children’s Medical Center - Prosper launched a new testing and diagnostic service that allows children experiencing seizures to receive care closer to their homes and communities. The test, called continuous electroencephalogram (EEG) monitoring, reads electrical activity in the brain and is an essential tool for detecting and diagnosing a seizure disorder. 

Prosper resident and father of two, Kevin Greene knows all too well the challenges of having to leave your community to seek medical care and how that impacts a family. In February, the vice president and administrator at Cook Children’s – Prosper, Greene and his wife Christy, took their 9-month-old son Matthew to the emergency department at Cook Children’s Medical Center in Fort Worth after he experienced what appeared to be a seizure episode at their home.

The Greenes began to notice symptoms in Matthew a couple of weeks prior to the event and consulted with Damian Campbell, D.O., a Prosper-based pediatric neurologist and member of Cook Children’s Physician Network.

“We took Matthew to see Dr. Campbell, who is amazing, and we were watching his condition closely, but following this episode he encouraged us to go to our medical center in Fort Worth for further evaluation,” Greene said. “Our medical center in Prosper was open, but I knew we did not offer continuous EEG monitoring at the time and would not be able to provide the appropriate services to be able to monitor and capture what was happening. Upon arriving in Fort Worth, Matthew was examined in the emergency department where he was ultimately admitted to our epilepsy monitoring unit.”

The new EEG monitoring service at Cook Children’s – Prosper is made possible through collaboration with the Neurosciences team in Fort Worth, an effort that began months before Greene and his family had their own emergency.

Patients experiencing a potential seizure are admitted to the inpatient unit at Cook Children’s – Prosper where an EEG technician sets up mobile monitoring equipment and attaches monitoring electrodes to the patient’s scalp. The test livestreams to clinicians in the Epilepsy Monitoring Unit at Cook Children’s Medical Center in Fort Worth for observation and reading. The monitoring process typically takes at least 24 hours and requires an overnight stay in the hospital.

“This is a relationship that we've been working on for multiple months with the Jane and John Justin Institute for Mind Health team in Fort Worth led by M. Scott Perry, M.D., head of Neurosciences and Cynthia Keator, M.D., Medical Director of Neurology,” Greene said. “It is another great example of how the children and families we care for at Cook Children’s – Prosper will have the full weight and expertise of the entire health care system behind them.”

Several obstacles were overcome to make this remote monitoring service a reality, including building the technological infrastructure to support high-speed and secure data-sharing channels between the two medical centers for real-time monitoring of the patient’s EEG patterns and events.

“We’ve been fortunate to have the support of our main campus while we grow and bring various systems online,” said neurologist Damian Campbell, D.O. of Cook Children’s – Prosper. “Their support has offered us an opportunity to really plan out our own approach here in Prosper. We’re excited to now be able to provide continuous EEG monitoring to our community; another step forward toward our promise of delivering the highest quality care to every child in our care and communities.”

Communication and collaboration protocols between the monitoring team in Fort Worth and clinical team members in Prosper were established to coordinate care activities, share essential information and maintain seamless operations during the monitoring process. 

“The project's success can be attributed to the dedication, expertise, and commitment of professionals from Cook Children's in Prosper and Fort Worth working together to achieve a common goal of providing the best possible care for patients,” said Rickey Ross, manager of the Neurodiagnostics Lab at Cook Children’s – Fort Worth. “Not only does this enhance access to specialized care and more timely interventions for kids in Prosper and the surrounding communities, but it offers convenience and comfort for patients and families, promotes knowledge sharing and optimizes resource utilization, all of which ultimately improve patient outcomes and well-being.”

Monitoring technicians in Fort Worth and nurses in Prosper underwent comprehensive training and education to prepare to support the service. 

“Our nurses and clinical care team members at Cook Children’s – Prosper are excited to be able to care for patient’s needing this critical service,” said Sheralyn Hartline, RN, assistant vice president of nursing and patient care at Cook Children’s – Prosper. “Through the collaboration with our medical team in Fort Worth, we are forever changing the way families are able to access world-class pediatric neurological services close to home.”

“Our family is truly grateful for the amazing care and kindness that was provided to our son during our time in Fort Worth,” Greene said. “It brings me great joy knowing we are now able to extend the same high-quality care and experience to our families seeking care at Cook Children’s Medical Center – Prosper.”

But for some patients with severe seizures who have not responded to medications or who have had significant side effects with medications, epilepsy surgery might be the best option. The goal of epilepsy surgery is to identify and resect the area of the brain that is responsible for the generation of seizures. However, identifying this brain area can be challenging.

Thanks to new techniques developed by Christos Papadelis, Ph.D., director of Research at the Jane and John Justin Neurosciences Center at Cook Children’s, the ability to better locate the source of epilepsy has improved. Working with researchers at Boston Children’s Hospital, Massachusetts General Hospital, and Harvard Medical School, Dr. Papadelis developed a novel biomarker, or medical sign, that can identify the area in the brain causing seizures with non-invasive strategies and high precision. Using premiere imaging technology such as magnetoencephalography (or MEG) and high-density electroencephalography (or EEG), the team measured the magnetic and electric activity generated by the human brain to locate the biomarker and source of seizures. This work was recently published in the Annals of Neurology, a widely-respected journal produced by the American Neurology Association.

Improvement in precision of locating the source of seizures decreases the risk that a child will suffer from disability due to surgery. It also increases the odds that children will recover function and improve their quality of life without negative consequences. While still not easy, this research will allow parents to feel even more confident about their decision to move forward with such a complex procedure as epilepsy surgery.

Moments earlier, the 15-year-old Weatherford, Texas teen was watching a movie with his younger sisters when all of the sudden, a fit of cursing and yelling came over him. He wasn’t doing it on purpose, but he couldn’t stop. The strangers staring at him didn’t know what was happening.

Feeling he had no other choice, it was then that Damian decided to stop going out in public.

“Everyone in the theater began pointing and laughing at him. People didn’t get it, they looked at him like he was crazy,” said Patricia Wells, Damian’s mother.

Being misunderstood is something Patricia had grown used to over the years of caring for Damian. Teachers, family members and even some doctors couldn’t comprehend how a boy who seemed so normal one moment could have frightening, emotional outbursts for no apparent reason the next.

WARNING - Some may find this video difficult to watch. It shows Damian Wells during a seizure. 

It’s hard to say how Damian ended up at this point.

At the age of 5, he was diagnosed with epilepsy. Patricia remembers holding her little boy as he would scream, a look of terror on his face. She used to call these spells, but in reality they were seizures. The medication he was prescribed helped keep the seizures at bay for many years, but something changed around the time he turned 12.

“He could be watching the Disney Channel and he would go into a rage, just out of the blue,” said Patricia. “It was like watching a horror movie and your child was right in the middle of it.”

Damian underwent an electroencephalogram (EEG), used to detect abnormal electrical activities in the brain. The test should have revealed if the fits were caused by epilepsy. It didn’t. Instead, doctors were left with little explanation and suspected his problems were psychological.

“I knew that couldn’t be right,” said Patricia. “Over time, we were told he had Tourette’s, PTSD (post-traumatic stress disorder) and many other mental disorders. None of them ever made sense.”

Damian’s life began to deteriorate. He experienced up to 50 fits a day, and by the tenth grade could no longer go to school. Scared he would hurt someone or himself, his family turned to a psychological facility for help. Shortly after, Damian ended up in the Pediatric Intensive Care Unit (PICU) at Cook Children’s. He’d been given a toxic dose of a drug used to treat behavioral issues.

While he didn’t know it at the time, this hospital stay would be the turning point for Damian.

This would be the first time he’d meet Scott Perry, M.D. an epileptologist and medical director of the John and Jane Justin Neurosciences Center at Cook Children’s.

“I was consulted by the PICU to check on a child they believed had Tourette’s,” said Dr. Perry. “Once I met the family, I realized that wasn’t the case. They described a look he would get right before a fit. It was a distinct frown, followed by fidgeting and cursing. That information was key.”

The frown they were describing is called Chapeau de gendarme, a tell-tale sign of frontal lobe seizures.

Because Damian had this stereotyped behavior (i.e. he always had a frown, followed by fidgeting, followed by cursing), Dr. Perry was confident epilepsy was to blame. He just had to prove it.

Once again, Damian underwent an EEG and once again, it didn’t reveal much. Dr. Perry wasn’t giving up though. He ordered more tests and compared those tests to the EEG results.

“I knew I was looking for something in the frontal lobe of the brain because of his stereotyped behaviors, the brief duration of each event, and the circumstances in which it occurred. When seizures come from the frontal lobe, strange, hyperactive behaviors develop,” said Dr. Perry. “I’ve never seen anyone curse during a seizure before, though, so that was unique.”

Dr. Perry’s suspicions were right. Using various tests, he was finally able to pinpoint the very spot in Damian’s brain where the seizures were occurring.

“As a mom, I spent every day afraid I was going to lose my son,” said Patricia. “Dr. Perry always said, ‘I’m going to fix this, I’m going to figure this out,’ and he did. He’s an angel. He saved my son’s life.”

In September 2015, Damian underwent a brain resection, meaning the portion of his brain where the seizures were occurring was removed.

Learn more:

• Scott Perry, M.D.
• Jane and John Justin Neurosciences Center 
• Cook Children's plays vital role in successful CBD study involving epilepsy patients 
• Drug in Cook Children's epilepsy trial shows positive results in separate trial
• Texas legalizes non-euphoric cannabidiol for seizures in epileptic patients
• Cook Children's Epilepsy Monitoring Unit

Count your many blessings. See what God has done!"

- Johnson Oatman Jr.

I grew up knowing every word to the song, “Count Your Many Blessings,” but never truly appreciated the powerful message until this past summer.

Our daughter, Eliza, got sick June 19, 2015. It seemed like a typical stomach bug. But by the next day, we knew something was wrong. She was hospitalized at Lakeside Covenant in Lubbock, Texas a couple days later.

It was there that we received her diagnosis, Hemolytic Uremic Syndrome, or HUS, caused by E coli. They arranged for us to be immediately flown to Cook Children’s Medical Center in Fort Worth.

Three letters: H.U.S – that would change our lives forever.

Eliza’s kidneys began shutting down; she was exhibiting signs of neurological disturbances as well. We couldn’t believe our healthy child was going downhill so quickly. She was transferred to the PICU (Pediatric Intensive Care Unit), where we would spend the next 26 days.

The staff in the PICU started Eliza on dialysis right away. As a mother, it was my worst nightmare, to see my child unresponsive, lying on a bed with multiple machines keeping her alive.

Eliza wasn’t following the normal progression of HUS. She began having seizures, her kidneys still refused to work, she continued to have gastrointestinal bleeding, and was showing signs of extreme pain.

By this point, she had gone through several blood transfusions, plasma exchanges, dialysis around the clock, numerous MRIs, CAT scans, EEGs, and EKGs. She had a whole team of doctors and they were all stumped. We were constantly told that she wasn’t their typical HUS patient.

Thankfully, Eliza’s nephrologist, Dr. Jennifer Willis, kept researching and questioning Eliza’s unusual symptoms. This would eventually save Eliza’s life. She suspected Eliza not only had HUS, caused by E coli, but also atypical HUS, a genetic disease.

She approached my husband and I about running a genetic test on Eliza to confirm the atypical HUS diagnosis, but the results would take up to 8 weeks. In the meantime, she wanted to try a medication called Soliris. She warned us that it was very expensive and she was not sure if insurance would cover it.

We continued to pray, we asked for prayers, and decided it was worth the risk. We just wanted our Eliza back! This was the first moment I truly realized we might lose our precious baby. We had been so hopeful and optimistic the entire time, but my hope was gone. I pleaded with God to be with Eliza and her medical team and save her life.

He answered my prayers and the prayers of many who were praying all over the world for her. Dr. Willis was right, after two doses of the medication, we began to see dramatic improvement. Eliza woke up, began talking, and progressed more and more every day.

Fifty days after exhibiting her initial symptoms, we were released from Cook Children’s. During Eliza’s summer at Cook Children’s we became friends with all the employees. We knew the PICU nurses, the receptionists and Eliza’s specialists.

Cook Children’s became our home. Eliza now looks, sounds, moves, and plays like a normal 2 year old. The syndrome, atypical HUS, has long-term side effects on some of her organs.

Currently, Eliza’s kidneys function at 60 percent. She is on multiple medications for both seizures and high blood pressure. The atypical HUS diagnosis was correct, as genetic tests eventually confirmed. Eliza receives a Soliris infusion every other week. Our sweet girl is a model patient. She jumps on the scale, stands to get measured, picks an arm for the blood pressure cuff, and watches while her port is accessed.

We owe so much to all the wonderful doctors, nurses and staff at Cook Children’s, as well as family, community, and the countless people praying for Eliza.

Is it a normal life? No, but it is her life and we thank God every day.

“Count your blessings, name them one by one. Count your many blessings, see what God has done.”