In 2024, the Texas Health & Human Services Commission (HHSC) denied contract renewals to several Medicaid providers, including three non‑profit, Texas‑based children's hospital plans: Cook Children's Health Plan, Texas Children's Health Plan and Driscoll Children's Health Plan. Despite their combined 60-plus years of proven, high‑quality care, HHSC awarded the multi‑billion‑dollar Medicaid STAR/CHIP contracts to several publicly traded insurers beholden to out‑of‑state shareholders.

This precarious situation will have devastating consequences for 10,000 children with complex medical conditions, including 170 relying on ventilators and 1,700 who use wheelchairs. Beyond the direct impact on these children and their families, the repercussions extend to our community's economic stability, potentially costing 400 jobs in Tarrant County and up to 2,000 jobs across the state within Texas-based children’s health plans if this issue is not resolved. 

The Fort Worth Star-Telegram provides coverage of the situation here. 

In 2024, the Texas Health & Human Services Commission (HHSC) denied contract renewals to several Medicaid providers, including three non‑profit, Texas‑based children's hospital plans: Cook Children's Health Plan, Texas Children's Health Plan and Driscoll Children's Health Plan. Despite their combined 60-plus years of proven, high‑quality care, HHSC awarded the multi‑billion‑dollar Medicaid STAR/CHIP contracts to several publicly traded insurers beholden to out‑of‑state shareholders.

Cook Children's Health Plan President Karen Love spoke with Becker's Hospital Review to provide an update on the situation and an explanation of the impact this decision would have on the state of Texas and children's access to non-profit health care coverage.

“We take our direction from our community,” Love told Becker’s. “Provider-affiliated plans like ours, where you have the hospital and the doctors and the payer all working together for the benefit of these children, is a different model of care and a different model of coverage than the large national for-profit companies.”

Read the article here. 

Imagine being forced to forfeit a local, trusted resource that serves as your medically fragile child’s lifeline to out-of-state strangers for no good reason at all. That is exactly what Texas’ Health and Human Services Commission will do by cutting off access for Texas families to long-established, community-based health services.

Last year, the Health and Human Services Commission, which oversees the contracts and funding for the state’s Medicaid STAR and CHIP programs, denied Cook Children’s Health Plan renewed contracts to serve its membership. It did the same to two other nonprofit community health plans in South Texas and the Houston area. Instead, the commission chose to give those contracts to numerous for-profit health care companies, most of which are not based in Texas. The decision would force 1.8 million children and pregnant women who qualify for the Medicaid STAR and CHIP programs to switch from the health plans they rely upon to unfamiliar, corporate insurers beholden to shareholders.

We are doing everything we can to protect North Texas families from this harmful decision. But we can’t do it without the support of Texas Legislators.

If lawmakers do not intervene, the commission’s decision will upend the lives of Texas families, including 125,000 vulnerable North Texas children who rely on Cook Children’s Health Plan. They’ll have to start from scratch with a new health insurer and possibly new doctors after years of establishing a specialized medical team and complex care plans for their children. This could result in delayed or disrupted care, including for patients on a ventilator who are enrolled in Cook Children’s Health Plan.

Very soon, Texas Legislators are expected to consider several bills to protect the health care of vulnerable Texas children.

These bills would change the law on how the commission awards contracts for the management of its STAR and CHIP programs. Simply put, they would give Texas families a choice in health insurers and protect their right to have their Medicaid-dependent child’s health care managed locally.

Needlessly foisting a change onto the most vulnerable in our community could be disastrous for Texas families. Change is hard even in the best of circumstances. When you have a medically fragile child, forced changes pile hardship onto an already heavy burden. Just ask Breanna Hernandez.

Her son, MJ, was born prematurely at 27 weeks. Now 10 years old, MJ requires complex care from multiple specialties like neurology, pulmonology and gastroenterology, to name a few. All of MJ’s current doctors, along with many of his therapies and services, are part of the Cook Children’s Health Plan network. His family relies on the STAR Kids program through the health plan to cover most of MJ’s health care costs, including the supplies that allow him to receive nutrition safely through a port in his stomach.

“Losing the health plan would be like a tsunami or a tornado coming through our lives,” Hernandez said. “We never know what we’re going to get every morning when we wake up, but waking up with the knowledge that we have this established resource is a lifeline, a constant. It being taken away is something else that we would also have to worry about.”

Hernandez is on a first-name basis with MJ’s case manager at Cook Children’s Health Plan. That type of connection, where everyone feels like family, is central to Cook Children’s culture. Knowing the people who manage your child’s care also live and raise their families in the same area is another key benefit of a community-based health plan. They have first-hand knowledge of the local resources and how to help members navigate them. They understand the unique needs of local children and care deeply about the health of the community because it’s their community, too.

Private, out-of-state insurance companies can’t offer the same connection. The majority aren’t embedded in the communities they serve.

Cook Children’s Health Plan has been providing health care coverage for families and children with limited resources for more than 20 years, and Cook Children’s itself has been serving this community for more than 107 years. As a nonprofit organization, we use our resources to support our promise of improving the well-being of every child in our care and in our communities.

This year, Cook Children’s will open two new neighborhood health centers, for a total of nine centers strategically located throughout Tarrant County in areas with little access to health services close to home. The majority of neighborhood health center patients are dependent on Medicaid. These centers offer basic, yet critical, health and wellness services, including behavioral health, for children who otherwise might go unserved. It’s your health care dollars in action, making a real difference in the lives of children in your community — a stark contrast from several out-of-state corporate insurers selected by the Texas Health and Human Services Commission whose profits flow to shareholders.

The commission’s decision is flawed and wrong for Texas families. It’s the result of a subjective and unsound contract-renewal process that is not consistent with the law. Instead of considering past performance and quality when awarding these contracts, which the commission was legally required to do, it ignored decades-long telling track records, like Cook Children’s Health Plan’s high member ratings and demonstrated quality of care, and chose untested promises made by many for-profit insurance companies.

The proposed bills would replace the current error-prone, subjective bidding process with a more modern and straightforward system. Most important, the bills would allow families enrolled in STAR, CHIP and other Medicaid programs to choose whether they want to remain on their current health plans or switch to the private insurers.

“I would ask lawmakers to spend one day, or a week, in our lives,” Hernandez said. “There are a lot of things that us parents go through daily with these kiddos’ lives, and seeing it from somebody else’s perspective, really digging in there and living that day-to-day, would change your mind on a lot of the decisions you make. Please, save Cook Children’s Health Plan.”

We urge the Legislature to join us in viewing the world through the eyes of the Hernandez family and the thousands of others like them. Support the proposed legislation, and give Texas families the power to choose. Focus on the well-being of the children in our communities, and not the countless out-of-state shareholders, by supporting nonprofit community-based health plans. Let’s protect our children and ensure they receive the quality health care they deserve.

Rick W. Merrill serves as president and CEO of Cook Children’s Health Care System.

Cook Children's Health Plan President Karen Love and member Liz Piñon spoke with CBS 11 to share the real impact this decision will have on children’s access to non-profit health care coverage.

Read the full story here. 

Suzanne Whitworth, M.D., division chief of Pediatric Infectious Diseases at Cook Children’s, joined WFAA's Midday newscast to talk about the recent measles exposure in Collin County. She discussed what parents should know, how to prevent it, and more.

Watch the live interview here

An extended version of the interview can also be seen on WFAA+. 

with an insightful conversation from two esteemed leaders at Cook Children’s - Prosper: our very own Chief Medical Officer of Cook Children’s – Prosper and pediatric gastroenterologist, Tony Anani, M.D., MBA, MPH, and President of Cook Children’s – Prosper, Kevin Greene.

Together, they delve into the landscape of pediatric healthcare, what makes Cook Children’s unique, and the unwavering commitment to providing exceptional care for our young patients. Dr. Anani brings his invaluable experience from within Cook Children's, offering a unique perspective on our daily mission to fulfill our Promise. Kevin Greene, shares his broader insights and expertise as Cook Children’s – Prosper continues to grow and add services just two years after opening.

Listen on Apple Podcasts.

Listen on Spotify.

Cook Children’s has six negative-pressure rooms to care for children with the virus. Rooms have space for family members and specialized air ventilation systems that pull air inward, preventing recirculation.

Dr. Whitworth hopes the rooms will not be needed.

“If everyone gets vaccinated, we won’t have this crisis,” Dr. Whitworth said. “This is preventable.”

Read the full story here.

Watch Dr. Whitworth's interview here.

Alice Phillips, M.D., medical director for Abulatory Quality at Cook Children’s, said families can protect their babies by making sure everyone else is up to date on their immunizations.

“It’s very similar to advice we give them for other vaccine-preventable diseases. We want to cocoon that baby in protection,” Dr. Phillips said. “That’s what’s so critical for families and for the community to understand about vaccines: What we all do protects those infants who can’t get vaccinated yet.”

Read the full story here.

"There's really no reason why we should have to go through this again," said Dr. Morrow. “We're all really sad about it, we're really, really concerned because we've done this already."

She's been with the health care system for 38 years and was around in 1989 when a measles outbreak impacted the entire state.

"I ended up with about about 9 or 10 children with measles," recalled Dr. Morrow. "Every child that I diagnosed was admitted to the hospital."

The current outbreak and the news of a school-age child dying from measles in West Texas has many parents calling Dr. Morrow's clinic to check their kid's vaccination status, she said.

"Get vaccinated. The vaccine is extremely effective. It's one of the most effective vaccines that we have in our armamentarium of protected kids," said Dr. Morrow.

Read the full story here.

Measles is "probably the most infectious contagious disease on the planet," said Dr. Whitworth.

"We know that about 40% of kids under the age of five who get measles are gonna wind up in the hospital, and nobody wants that," Dr. Whitworth said.

Read the full story here.

Cook Children's and Texas Health Resources share a child care center known as Kids' Place.

Kids’ Place allows parents like Anne Kirk, M.D., a pediatric hospitalist and medical director for quality and safety provider education at Cook Children's, to work and know their children are safe and nearby. The center provides flexible hours, a crucial benefit for health care workers with unpredictable schedules.

"I think because they cater to nurses and physicians, they kind of understand our lifestyle a little bit better. They, I think in some ways, are just kind of more understanding of our intense schedules... (which) makes me feel more comfortable leaving my kiddo," Dr. Kirk said. "I think being a first-time mom, I was very anxious about being away from my baby, and having him just across the street has helped me mentally so much to not be nervous and worried about him. So it's really worked out amazingly for us."

View the full story here.

“Instead of growing straight, it starts to grow in a more curved way, so that your leg becomes bowed out to the side,” said Dr. LaMont, one of the surgeons involved with Smith’s care.

Dr. LaMont said the best option for Smith was to have his left leg intentionally broken, with pins inserted into the bone to help straighten his leg over a matter of months.

Smith had the surgery immediately following his junior season at North Crowley High School in Fort Worth.

“It definitely taught me to just never take anything for granted,” Smith said. “And it really taught me that I can do anything I put my mind to.”

View the full story here.

On March 7, 2024, Cook Children’s Health Plan (CCHP) was denied a new contract for STAR & CHIP Managed Care Services by the Texas Health and Human Services Commission (HHSC). Though CCHP’s initial protest to this decision has been denied, the team refuses to back down and is currently fighting for a reversal in the courts.

If not reversed, this decision will result in a serious disruption in care for nearly 125,000 low-income CCHP Members , pregnant women and medically complex children. It could also leave hundreds of CCHP employees—who work tirelessly to serve their community—in search of a job.

CCHP Complex Case Manager, Jami Jensen, RN, CCM, shared some of the crucial ways she helps patients navigate the complex health care system daily—and the potentially devastating consequences of a STAR & CHIP contract denial.

ABOUT CCHP CASE MANAGEMENT

CCHP case managers advocate for vulnerable families and children in our community all day, every day, through three vital areas of focus:

• Social determinants of health
• Coordination of care
• Education

These services have been proven to increase preventive care, decrease ER visits, and empower low-income local residents as they navigate health care.

THE CCHP DIFFERENCE

Unlike national health plans, CCHP is intertwined with Cook Children’s Health Care System and the local community.

“Some of us have worked within the Cook Children's Health Care System, and some of us have children of our own who have been through the system as a patient,” Jensen said. 

Because of their close proximity, case managers can communicate with providers seamlessly, get Members answers quickly, and even offer occasional on-site support. 

“I have gone to clinic appointments with patients before, and we’ll sometimes even meet complex patients at the hospital or in their home,” Jensen said.

CCHP case managers maintain an open-door policy—even for Members who have left the health plan.

“Even if they just have a simple medication issue, they know who to call,” Jensen said. “It’s so easy for them to reach out to us if they need something.”

SOCIAL DETERMINANTS OF HEALTH

Social determinants of health are the non-medical factors that influence health outcomes, such as socioeconomic status and access to basic needs. Before concentrating on health care issues, people must have their basic needs met.

Many CCHP Members lack reliable transportation, access to consistent food sources, and knowledge of community resources. That’s where CCHP case managers step in—to help families acquire all of the local benefits they qualify for. The knowledge and resources that come from building relationships between case managers and Member families are invaluable.

COORDINATION OF CARE

Case managers constantly collaborate with nurses, social workers, and providers within the Cook Children’s Health Care System to communicate Members’ needs, coordinate appointments and follow-ups, and close gaps in care.   

Oftentimes, when families are overwhelmed with a child being in the hospital, crucial steps for care get overlooked during discharge. Case managers bridge those gaps by reviewing each patient’s record, following up after their admission, and ensuring the family has all necessary next steps and appointments in order.

EDUCATION

Case managers go above and beyond to solve any and all types of Member needs. From helping families apply for state programs for children with special needs, to helping new moms find Medicaid-covered formulas, there’s nothing CCHP won’t do to make Members’ lives easier. 

With the help of staff members, who have extensive nursing backgrounds, CCHP has also been able to implement preventative programs and services for high-risk populations, including members with diabetes, asthma, and pregnancy risks.

CONSEQUENCES OF STAR & CHIP CONTRACT DENIAL

If the STAR & CHIP contract is ultimately denied, approximately 125,000 Members and children could be forced to switch providers and find new, in-network doctors.

Patients relying on life-saving treatments and medical equipment, such as ventilators, might have to find new suppliers and undergo lengthy authorization processes. These delays could cause serious harm to their health.

The loss of on-the-ground support from CCHP would force Members to navigate national call centers for support through these disruptive transitions—and there’s no guarantee that their new plans will offer knowledge of local resources.

“These families already have so much on their plates and it’s a lot of new information they might not understand,” Jensen said. “It’s so awful thinking how much stress this will add for them.”

WHAT’S NEXT?

Though Health Plan case managers continue to work tirelessly to support their Member families, they are also battling the anxiety of potential unemployment. A denial of the contract would more than likely threaten the sustainability of CCHP as a whole.

The CCHP team laments the potential loss of the heart, soul, and hard work they have poured into making health care more accessible for the most vulnerable Members of our community. National, for-profit insurers—favored over CCHP by the HHSC—cannot match the exceptional commitment and dedication that CCHP has demonstrated for over 20 years.

“We're not in this line of business for the profit,” Jensen said. “We are doing, and have always done what's best for the children in our community.”

This innovative series explores the fascinating connection between art, science, and creativity. The first episode, now streaming on PBS.org, dives into the work we're doing with Spikelangelo, the painting robot that helps children with epilepsy heal and recover through artistic expression.

“Confluence explores the enduring--and often surprising connections between three of the most essential aspects of the human experience: art, science, and creativity. A range of stories are told by a terrific array of characters, some well-known and others will be wonderful discoveries for audiences.”

Tune in to see the power of art and science coming together to make a difference in the lives of our patients!

To see the full list of Cook Children’s Physician Network physicians click here. 

At Cook Children's Hematology and Oncology Center in Fort Worth, we work every day to bring more innovative research, groundbreaking medical treatments and trailblazing clinical trials to children with cancer and blood disorders -- so that one day, our wish to erase kid cancer and blood disorders will come true. Learn more about our team and specialty programs.

CBS News featured Audrey Lindsay and her mother Kimberly Lindsay. CBS News Correspondent Tom Hanson covers Audrey’s journey with cancer and how her chemotherapy medicine from coral reef ecosystems is saving her life. Watch the story here.

In January, Audrey was diagnosed with acute myeloid leukemia (AML). CBS News spoke with Holly Pacenta M.D., Cook Children’s pediatric oncologist, about Cytarabine, the “backbone” medicine of Audrey’s chemotherapy. “She couldn’t be cured without this medicine” says Dr. Pacenta.

Cytarabine prevents cancer cells from replicating and comes from the sea sponge within coral reef ecosystems. Audrey is just one example of the 500,000 Americans living with leukemia that are treated with this chemotherapy. Saving these coral reefs essentially means saving lives. “There’s layers and layers of reasons to keep these reefs intact…Audrey is one big reason” says Hanson.

Just a few days before the interview, the Lindsay’s were told Audrey’s medicine is working and she is in remission. “If we didn’t have those habitats, we wouldn’t know all that we could be taking advantage of and putting to use in such a magical way to heal our children,” says Lindsay.

In 2020 there were nearly 4,000 new cases of leukemia in Texas (these were the last numbers available from the CDC). The national demand for medications that depend on marine habitats has jumped nearly 1400% in the past decade, totaling more than 3 million prescriptions in 2021.

generation and propagation of epilepsy activity in the context of this disorder as a network disease.  

His findings may help physicians to understand how epilepsy activity initiates in a focal brain area of children with epilepsy propagating later in other areas of the brain. Pinpointing these onset areas, where epilepsy starts, would allow stopping seizures through surgery in children suffering from epilepsy without resecting large brain areas, which may damage physiological brain functions such as the language or movements.

Pediatric epilepsy is a neurological disorder, characterized by recurrent seizures due to abnormal electrical brain activity. It has been estimated that 4-10 out of 100 children suffer from epilepsy. A significant proportion of these children are unable to control their seizures with drugs dealing with recurrent uncontrolled seizures. These seizures may have a severe impact on the quality of child’s life leading to serious cognitive and behavioral problems as well as increased mortality. Therefore, it is critical to develop new strategies for the diagnosis and treatment of uncontrolled seizures in children with epilepsy.

Children with uncontrolled seizures undergoing surgery often require the placement of electrodes inside their brain for identifying the area where seizures are generated. Yet, seizures occur spontaneously and propagate fast from onset areas to areas of spread. Thus, we should have to wait for a seizure to occur and this may take several days. This increases the patient’s time in the hospital and thus the risk of infection from invasive electrodes placed in the patient’s brain. 

In this study, Cook Children’s Neuroscience Research team showed that they can map the onset of this propagating activity without having to wait for a seizure to occur. Such a development can shorten the patient’s stay in the hospital improving the presurgical evaluation procedure.

This study is funded by the National Institute of Neurological Disorders and Stroke and is in collaboration with the University Campus Bio Medico in Rome, Italy, the Boston Children’s Hospital, and Harvard Medical School. Margherita Matarrese, a Ph.D. student of Bioengineering under the supervision of Professor Papadelis serves as first author of this scientific paper.

Coming Soon

The Jane and John Justin Institute for Mind Health at Cook Children’s, opening in October 2023, is bringing together nine specialties under one roof. Pediatric specialists in neurological, developmental and behavioral health are changing the way we deliver health care. Together, we’re healing minds and bodies and sharing smiles that warm the soul and connecting care for kids unlike anyone else.

The Cook Children's Creative Artist in Residence Programme (CARPE) offers opportunities for expression and control through a variety of artistic media. Through painting, music, writing, dance, theater and other artistic exploration, patients and families at Cook Children's connect the creative arts with the art of healing.

From Reporter Kevin Reece:

"Artist Sydney Peel is a former patient herself and is using her own brand of magic to help pediatric patients.

Cook Children’s Medical Center is in the business of saving lives. It takes a dedicated and intricately trained team to do that. 

But it is also a team that includes a rolling cart filled with paints, brushes, stickers… and plenty of glitter. 

‘Oh, for sure,’ said Sydney Peel when asked if glitter was indeed part of her cache of supplies.

Peel is the resident artist at Cook Children’s. On any given day you can find her pushing that cart from room to room offering pediatric patients a much-needed break from the sometimes less pleasant visit of doctors and nurses."

José L. Iglesias, M.D., FACS, Medical Director of Pediatric Surgery at Cook Children’s Medical Center, who was the lead surgeon during Cook Children's first separation of conjoined twins, was featured on the cover - “Inside Cook Children's Miraculous Separation of Conjoined Twins.”

Dr. Iglesias, Ben Gbulie, M.D., plastic surgeon; Chandra Reynolds, M.D., lead anesthesiologist; Marty Knott, D.O., primary surgeon; Mary Fran Lynch, M.D., neonatologist; and Chad Barber, M.D., neonatologist were featured in the nine-page spread. This issue is available on newsstands now.

Fort Worth Magazine: “It’s rare as it is, being born as conjoined twins. And to survive as long as they have, even rarer. But to separate via a historic procedure at Cook Children’s Medical Center makes the lives of AmieLynn and JamieLynn Finley a miracle.”

Read the full story here.

 “Surgical resection of the brain area where these functional networks are localized offers higher chances of seizure freedom than conventional methods,” said Dr. Papadelis, director of Neuroscience Research at Cook Children’s. “This novel method has the potential to improve the outcome of children with epilepsy, particularly those who were previously ineligible for neurosurgery due to the absence of abnormal activity in their electrophysiological conventional diagnostic tests.”

 One out of every 100 children in the U.S. suffers from epilepsy, a severe brain disease that causes frequent and unprovoked seizures. Anti-seizure drugs can control seizures in most cases, but they fail in 30% of children suffering from epilepsy. Children with uncontrolled seizures are at increased risk for poor long-term intellectual and psychological outcomes and poor health-related quality of life. For these children, brain surgery is the best available treatment since it offers high chances of seizure freedom.

 This study is funded by the National Institute of Neurological Disorders and Stroke and is in collaboration with the Boston Children’s Hospital, Massachusetts General Hospital and Harvard Medical School. Ludovica Corona, a Ph.D. student of Bioengineering at the University of Texas at Arlington, serves as first author in this scientific paper.

Coming Soon

The Jane and John Justin Institute for Mind Health at Cook Children’s, opening in October 2023, is bringing together nine specialties under one roof. Pediatric specialists in neurological, developmental and behavioral health are changing the way we deliver health care. Together, we’re healing minds and bodies and sharing smiles that warm the soul and connecting care for kids unlike anyone else.

 About Cook Children’s

Cook Children’s is more than a health care system: we strive to be an extension of your family, growing with your child from their first steps to adulthood. By collaborating to deliver on our Promise—to improve the well-being of every child in our care and our communities, we connect the dots for our patients. Between primary and specialty. Between home and medical home. Between short-term care and long-term health.

Based in Fort Worth, Texas, we’re 8,000+ dedicated team members strong, passionately caring for over 1.5 million patient encounters each year. Our integrated, not-for-profit organization spans two medical centers (including our new, state-of-the-art location in Prosper), two surgery centers, a physician network, home health services and a health plan. It also includes Child Study Center at Cook Children's, Cook Children's Health Services Inc., and Cook Children's Health Foundation. 

And our impact extends beyond the borders of Texas. We proudly treat children from virtually every state in the nation and 32 countries. By seeing the world through the eyes of children and their families from all backgrounds, we’re able to shape health care suited to them: connected by kindness, imagination and respect—with an extra dose of magical wonder.

Discover more at cookchildrens.org.

“When I first met Tyler and his mom, they let me know how important football was to Tyler,” LaMont told ESPN. “Had Tyler not had surgery, he would have been at higher risk for degenerative knee conditions to occur earlier in life and possibly shorten the time he could play football.”

Read the full story here.

Dr. Guzman, pediatric emergency medicine physician and Medical Director of the Aim for Safety Program, says that the school-aged kids who dealt with the tragedy will "definitely have long-lasting effects," some of which will include "stress, anxiety [and] their comfort level with returning to school."

Read the full story here.

Read the full story here. 

“I grew up in a predominantly Mexican-American community,” said Dr. Soria-Olmos. “We know of a lot of kids in the Hispanic community who are the very first trying to do something, and ultimately their families came here to give them the opportunities to do something, but it's really hard when you don't see people like you in the positions that you're striving to go into.” 

Dr. Soria-Olmos is a first-generation Mexican American doctor practicing at Cook Children's Pediatrics in Haslet. She is also a medical advisor for Digital Health, contributing to and providing guidance for Checkup Newsroom.

In a recent interview with NowThis media, she said she was able to graduate from medical school thanks to her hard work and loving support from her family. 

“After having been through the journey that I went through, I want to use it to give back and basically show other young Latina women that if they want to go into STEM or if they want to go into medicine that they can,” she said. 

In addition to being a pediatrician, Dr. Soria-Olmos is also an advocate for the Hispanic community. Throughout the pandemic, she has given countless interviews and talks in Spanish to help people better understand COVID-19 and what they can do to protect themselves and their families.

Dr. Zelime Elibol, director of the Children's Tourette Syndrome Clinic at Cook Children's Medical Center in Fort Worth, said she's seen an increase in young teenage girls with no history of a tic disorder coming to her clinic with uncontrollable physical and verbal tics.

It's a real functional tic disorder, but it's not Tourette Syndrome, which is a neurological movement disorder that typically affects more boys than girls and starts at a young age.

"Teenage girls that we're seeing are having really severe tic attacks that involve the entire body," said Elibol.

They're symptoms that could be triggered by repeatedly watching social media videos of others displaying tics and while the exact cause is unknown Elibol said it could affect young people already living with anxiety and depression, which afflicts more young girls than young boys.

One study that dove into the trend found pandemic stress and social media could be fueling the trend.

"So if we're developing more functional neurologic symptoms or physical symptoms, and you're watching social media, what you're seeing on social media are tics, it makes sense that that is, perhaps, going to be the most common physical manifestation of the stress that's coming out right now," said Elibol.

The problem, she said, isn't related to a neurological structure abnormality, or "hardware problem" with the brain.

There's no quick fix, but therapy can help.

"I do think it's important for doctors, and schools, to realize that these children aren't faking it and they're not crazy," said Elibol. "There is something going on, we just have to get to the bottom of it."

Read the full story on NBC 5's website.

You may also be interested in our original story "TikTok & Tics: Rise in Movement Disorder Documented on Social Media."

Angie, Cason's mom, told Good Morning America that she worries her son might get reinfected with the novel coronavirus at school. She’s urging students to wear masks for the sake of her immunocompromised son, and all kids under age 12 who can’t yet get vaccinated for COVID-19.

Read the full GMA story here.

"He would have coughing bouts where he was choking," Crowell said.

Bridger is among the children battling a rare summer outbreak of a virus that attacks the lungs. Parents around the country are being warned about Respiratory Syncytial Virus, or RSV, a disease that infects the lungs and breathing passages and usually occurs in the winter. 

Healthy people typically experience mild, cold-like symptoms, including cough, congestion and fever. But the virus can be serious among infants and the elderly, leading to as many as 14,500 deaths a year. The virus is responsible for more than two million outpatient visits a year for kids under five.

"This is more RSV so far than we had three or four years ago in a typical winter season, and the numbers here are still climbing," said Dr. Suzanne Whitworth, the medical director of infectious diseases at Cook Children's Medical Center.

The U.S. is in the midst of an unusual summer surge, especially among southern states. Those seeing a surge include Alabama, Arkansas, Florida, Georgia, Kentucky, Louisiana, Mississippi, New Mexico, North Carolina, Oklahoma, South Carolina, Tennessee and Texas, according to the Centers for Disease Control and Prevention. 

"For the last 15 months, no one in the United States has been exposed to RSV. So we've got a lot of susceptible hosts," Dr. Whitworth said. "The other thing is, the masks are off, we're moving back closer together, more indoor activities, more moving life towards normal."

Bridger is getting better, but it could be days before he can leave the hospital.

"If your child starts experiencing any kind of cold symptoms, take it seriously," Crowell said.

Read the full story here.

Speaking with Yahoo! News this week, Jason Terk, M.D., called the summer surge 'unprecedented.'

“If you look at typical RSV, it’s a type of illness that we see usually starting in late fall into the wintertime and then goes away usually by late winter, early spring," he told the online publication. 

Dr. Terk, a pediatrician at Cook Children's Pediatrics in Keller, says serious cases of RSV can occur but are rare.

“Most of the time RSV causes an illness that is entirely manageable at home with use of the usual things that we recommend for viral respiratory infections — nasal saline, suctioning and humidification,” he says. “If there’s a worsening of the respiratory status or they have a hard time breathing, then they need to be seen by their physician.”

Read the full story here.

In an interview with WFAA, pediatric infectious diseases physician Nicholas Rister, M.D. said, “We are seeing more numbers, which means we're seeing more sick kids, and the expectation over the next coming weeks and months is that we'll likely see more of that.” 

Dr. Rister advises parents to watch out for the typical symptoms of COVID-19, including fever, cough and shortness of breath, as well as gastrointestinal or abdominal symptoms, which “can be pretty prominent.” 

“It's not that adults can't have that, but we do have a fair number of kids who primarily present with like, 'my stomach hurts or I have diarrhea,'” Dr. Rister explained.

North Texas medical experts continue to encourage people to get vaccinated.

“For the kids that are old enough to get the vaccine, we're highly recommending that. We're asking people to be aware that COVID still exists,” Dr. Rister said.

According to the DFW Hospital Council, there are currently 605 COVID-19 hospitalizations in the 19 county region known as TSA-E. 

The highest numbers are as follows: 

• TARRANT = 222
• DALLAS = 173
• COLLIN = 96
• DENTON = 25

Read the entire story here.

She gives tips to parents about the importance of checking the volume of their child’s headphones and earbuds. The question for the column: My child wears headphones for school and on long car rides. Can this hurt their hearing? The answer, yes.

We live in a world where children love to watch movies or play games on their electronic devices, but Vaughan warns that prolonged headphone use can be risky.

“What is ‘too loud’ can vary based on a child’s ear size, type of headphones, and length of listening time,” Vaughan said.

With children having control of how loud or soft the volume is in their ear, she says listening at too high a volume can cause permanent hearing damage.

Vaughan explains if you can hear what your child is listening to, the volume is too loud and urges parents to use headphones with volume limits.

In the column, she also teaches parents that headphones are always a better route to go than earbuds, and often the volume has to be louder in earbuds to compensate for the way they fit in a child’s ear.

Lastly, she gives guidance that best practice may be for your child to go without headphones, but to also remember that external speakers can also be a hazard if your child is too close or the volume is too loud.

"I honestly had never thought about it before because there are so few of us, that’s always been my reality," Bowen-Jallow told "Good Morning America." "You’re just used to that."

Dr. Bowen-Jallow attained her undergraduate degree from Texas A&M University and earned a medical degree from the University of Texas Medical Branch.

"I wanted to be a cardiothoracic surgeon and then I desired to be a neurosurgeon," Dr. Bowen-Jallow remembered. "Right before I decided to go into pediatric surgery, I wanted to be a plastic surgeon."

She said becoming a pediatric surgeon was an accident, but it was the best accident that could've happened. She also believes it was worth enduring all 17 years of higher education.

"I'd committed to doing plastic surgery and was lining up interviews," she said. "As I signed up for my acting internship (AI), I wanted to do general surgery and was informed there were no more spots available. My only option was pediatric surgery, and within three days I'd changed my career path. I knew pediatric surgery was what I wanted to do for the rest of my life."

"Working with children is instant gratification," Dr. Bowen-Jallow explained. "If you perform a good operation, perfect your technique and pay attention to detail. Children will recover well."

Kevin Greene, assistant vice president of Cook Children’s - Prosper, recruited Dr. Bowen-Jallow.

"She’s a great surgeon, she comes from great training and she’s really been able to inspire and connect with families," he told GMA. "She's someone who personally wants to provide the best care for every child that steps foot on our campus."

Read the full story here.

Hospitalist nurse practitioner Amber Jewison and psychiatrist Kia Carter, M.D. were featured on the nationally-syndicated show “The Doctors” on Thursday, Nov. 5. The show highlighted a recent trend of TikTok videos that encourage viewers to take excessive amounts of the common allergy medicine diphenhydramine, aka Benadryl.

Cook Children’s first reported on these videos on Checkup Newsroom over the summer after three teens were admitted to the hospital for overdoses.

“We had three patients in a week who specifically told me they saw a video on TikTok that told them they could take Benadryl to get high, and it gave them a specific number (to take),” Amber said in an interview on "The Doctors." “When I viewed that video, I was pretty shocked.”

Patients who overdose on Benadryl can have abnormal electrocardiograms (EKGs) and may not be able to urinate. It’s even possible to suffer seizures. Amber has treated such patients and says parents are usually shocked to find out their child has overdosed.

“I try to tell parents that it’s really good to know what’s out there on social media and to be aware of what your kids may be doing,” she said.

And it’s not just shocking for parents. Medical professionals are also surprised to see healthy adolescents and teens taking part in these dangerous challenges.

“I was alarmed, I was extremely shocked that children are participating in something so lethal,” said Dr. Carter, who is also the medical director of Psychiatry at Cook Children’s. “Being a parent myself, it’s petrifying to think about the idea of my pre-adolescent daughter participating in this.”

So why do teens participate in dangerous viral challenges like the one involving Benadryl?

“I think people have to realize that children’s brains are not fully developed like an adult and judgement and executive function are a huge part in making decisions. When we see kids participating in these high-risk behaviors, we have to remember that their brains are not fully developed,” said Dr. Carter. “There’s some research also to show that social media and participating in these challenges is activating the reward center in the brain, which can cause kids to become further attached to participating in these challenges.”

Dr. Carter says it’s also important to realize the difference between a child participating in an online challenge, and one who is actively trying to harm themselves. She says kids who are taking part in challenges because they want to fit in are usually active and part of a social group. Kids who are taking medicines or over-the-counter substances to harm themselves are often excluded or bullied on social media.

Her advice for parents - be aware.

“Know what your children are doing on social media, participate and ask questions,” Dr. Carter said.

Miller Queen suffers from a severe and debilitating form of epilepsy known as Dravet syndrome, but you’d never know it by looking at him. At 7 years old, Miller is doing things that never seemed possible like playing soccer and going to school.

“Daily life when you don’t have seizure control is just a rollercoaster,” his mother Chelsea Queen told NBC 5. “You’re kind of always on edge waiting on the next seizure to happen.”

Starting at 6 months old, Miller was having as many as 10 seizures a day. Every treatment he tried failed and his parents were afraid to take their eyes off of him for even a moment.

Then, they found Cook Children’s and M. Scott Perry, M.D.,  an epileptologist and medical director of Neurology and the Genetic Epilepsy Clinic at Cook Children's.

“When you deal with epilepsies that are so difficult to control, it certainly becomes difficult not to feel that there’s not an answer,” Dr. Perry said.

Miller was enrolled in a clinical trial for the drug fenfluramine, which was once used as a popular appetite suppressant. Only a handful of hospitals nationwide were involved in the trial and Cook Children’s happened to be the only one in Texas. The drug completely stopped Miller’s seizures.

“The treatment completely changed his life,” Queen said in the interview with NBC 5. “He’s always been such a happy kid but now he’s able to experience life to the fullest.”

Overall, the clinical trial showed fenfluramine reduced seizures on average by about 70%. The research helped lead to approval from the Federal Drug Administration, opening up fenfluramine as a treatment for everyone with Dravet syndrome.

“The next medication to try and make you seizure-free is probably 2%, but you know what, you might be that 2% so that’s why we keep looking for it,” Perry said.

For Miller’s parents, they know this to be true.

Matt Queen, Miller’s father told NBC 5 “If something doesn’t work, don’t lose hope.”

Augmentative and alternative communication (AAC) allows non-verbal children and adults the opportunity to learn how to communicate through a speech generating device (SGD). The device, similar in shape and size to a tablet, can be mounted to a wheelchair or desk, and tracks the movement of their eyes to choose preset pictures, words and phrases, depending on skill level.

Many children who are non-verbal experience frustration and behavioral issues due to the inability to express themselves to others. AAC focused therapy has the ability relieve the tremendous frustration that often accompanies lack of communication. Therapy sessions often include games to help patients learn how to utilize their full field of vision and learn how operate the device independently.

“If you’ve had any experience not being able to communicate, even for a short-term, it’s very frustrating when people don’t understand you,” Speech/Language Pathologist at Cook Children’s Rehab Center Carol Edley said. “We’re trying to get them to be independent, intentional communicators, and not be placed in the role of a responder.”

Eleven-year-old Willy struggled with speech his entire life until his mother, Carla Cowdrey, learned about AAC therapy, and knew Willy would thrive with the opportunity to finally speak.

“I really had a feeling Willy could communicate, and this was the way he was going to do it,” Carla said. “And it turns out, it worked.”

Willy has learned numerous words such as go, play, help, mom and recently said “she look”, referring to Carol on the computer monitor, during a telemedicine visit. His word choices are described as a one to two-step process, depending on his choice, and his mom is hopeful for longer phrases in the future.

More recently, Willy has begun using short phrases to ask questions.

“When you start having the child demonstrate what they are thinking, in a manner where they are understood, for lack of a better term, it just makes the family happy,” Carol said. “All of a sudden this child is something more than they thought he or she could be.”

For Marisa Sanchez, AAC therapy has allowed her to hear her daughter Isabella’s first words at six years old, including the word every mother wants to hear: mom.

“Going into this journey six years ago, and not being able to have your six-year-old communicate with you, it’s hard,” Marisa said. “Hearing Isabella say mom for the first time is something I’ll never forget.”

Isabella knew four words on her device in February 2020, and now has access to 28 words to grow her vocabulary.

“We’ve increased the number of buttons presented to give her more language to choose from,” Isabella’s speech language pathologist Theresa Jones said. “She’s recently started using words like “papa”, “go… home”, “go”, “put” and “stop”. This is in addition of her using [the word] mom. Dad got to see her use “papa” for the first time via FaceTime since we only allow one parent with a patient at a time due to COVID-19.”

Edley estimates 30% to 50% of the eye gaze therapy patients have moved to telemedicine in the wake of COVID-19. The change in therapy delivery has given families the opportunity to learn how to adapt when glitches and other life moments occur.

“For the kids, it can be difficult to shift eye gaze from their device to the computer screen that may have a book or some other language activity. But that is life and they would have had to learn to shift attention in busier environments to talk.”

Although COVID-19 has shifted routines and therapies, the Cook Children’s speech pathology team has still been able to work with the AAC SGD vendor to supply the devices for patients and families to continue working on speech at home.

“Excitedly, we gave out a rental device with eye gaze yesterday. She hasn’t had the chance to practice these last two to three months,” Carol said. “It was exciting to see the little girl's reaction. With her, her mother and I have found low tech ways to train her eye gaze. The real thing is so much better.”

AAC eye gaze therapy has given parents hope, and their children, like Isabella and Willy, a voice.

Throughout the COVID-19 health crisis, Cook Children’s has made every effort to keep you safe while following the latest guidelines provided to us from the Texas Health and Human Services Commission and other governing bodies.

The latest change begins at 5 a.m. on Thursday, Oct. 1, 2020, when we will allow a maximum of two primary caregivers per admitted patient into the medical center. For clinic appointments and other outpatient visits, the one caregiver per patient policy is still in place, and siblings will not be able to attend appointments unless they have an appointment, as well.

When you visit any Cook Children's location, you can trust that your child's well-being is our top priority. To ease any concerns you may have about visiting, we have put multiple safeguards in place to create the safest environment possible for patients, families and staff.

Please read the following information for more details:

• Since April 13, only one caregiver has been allowed per patient, and we hope this change is welcomed news:

Beginning at 5 a.m. on Oct. 1, a maximum of two primary caregivers are allowed per admitted patient at Cook Children’s Medical Center.

• These two individuals will be able to accompany the patient to the hospital and stay with them in their room while they are an inpatient. Siblings and other visitors will not be allowed.
• All visitors to Cook Children’s are screened for COVID-19.
• Everyone over the age of 2 will be asked to wear a cloth or surgical mask at all times. Please bring a mask for you and your child, or one will be provided for you at the point of entry or at registration.
• For clinic appointments and other outpatient visits, the one caregiver per patient policy is still in place, and siblings will not be able to attend appointments unless they have an appointment, as well.
• SPECIAL SITUATIONS: For emergency room and urgent care visits, special exceptions will be made for families who have other children with them when they arrive. Special considerations are also made for situations involving end-of-life and other times when an additional visitor may be necessary.
• We follow all CDC guidance on how we respond to staff members, including physicians, who are exposed to COVID or those who may become ill. We have a very stringent protocol for how long we restrict these individuals from work, and an intensive process for when it is time for them to return.

We know this is a difficult situation, but we are continuing to do everything we can to keep everyone safe. Thank you for understanding.

https://cookchildrens.org/covid19

Due to current COVID-19 restrictions, only one parent or caregiver can attend appointments with patients. So each Tuesday, Aiden and his mother, Lori, attend appointments at Cook Children's where he receives chemotherapy. During his treatments, Aiden's father, Chuck, waits patiently outside of the building until Aiden is taken into a room with a window.

Once Aiden can see outside, Chuck hosts a one-man, music-free dance party for Aiden (and anyone else who happens to see him). The two are usually on the phone, talking to each other at the time. Aiden will call out dance moves for Chuck to do, and he even does a little dancing himself. Chuck says he does it to lift Aiden's spirits.

"The restrictions during the pandemic made me feel helpless. And the only way I knew to cope was to somehow be there during his treatments," said Chuck. "When he was able to come to the window, it just came natural to me to wave and carry on, which turned into me dancing!  I love knowing that it makes him giggle and smile, and let’s him know that his struggle is my struggle. I would never want him to think that he is going through this without his dad."

"I think it’s tough to break up a close knit family of four in these days, only allowing one parent to be present during Aiden’s clinic treatments and equally hard to not have his big brother Camden by his side too!" said Lori. "The population of kids present are all immunocompromised, so it makes sense, just a tough pill to swallow! I absolutely love listening to his giggles & watching him belly laugh at Chuck’s fancy dance moves. He can be having a terrible day, which transfers towards us some times too, and it’s instantly better once he sees his dad shake his booty. Aiden’s smile is contagious and can light up a room, even behind his mask."

The Yielding family is hosting a blood drive on Saturday, Oct. 3 in Fort Worth, Texas. Click here to sign up.

“We've definitely seen a high number of adolescent suicide attempts over the past couple of months, especially during COVID-19,” said Kia Carter, M.D., medical director of psychiatry at Cook Children’s Medical Center. “We've also seen younger kids endorse suicidal ideation.”

At Cook Children’s, the vast majority of patients treated for self-harming are girls, typically between the ages of 13 and 15. But Dr. Carter says she’s had patients in her unit as young as 4 years old talking about wanting to die.

“We've seen a huge increase with younger kids knowing what death is because of video games,” said Dr. Carter. “We have to assess their cognitive level and find out if they know what death means or do they think it’s like the video game where they die, but get a backup player.”

So far in 2020, 192 kids have been admitted to Cook Children’s for attempting suicide. Compare that to the same time period in 2015 when the hospital saw 88 patients - less than half of the current statistics.

Unfortunately, the data from Cook Children’s Behavioral Health Center is in line with a new study from the Centers for Disease Control and Prevention (CDC). The article, released Sept. 11, shows suicide rates among 10 to 24 year olds have increased 57.4% from 2007 to 2018.

"It's a real trend that has been demanding, for a while, a serious public health and research effort to understand what is happening and why," said Anna Mueller, an associate professor of sociology at Indiana University Bloomington. In an interview with USA Today, Mueller said she doesn’t buy that it’s just social media, though we do know many children express anxiety and depression linked to social media.

“Social media plays a big role in the mental health of children and teens,” said Dr. Carter. “They experience bullying online, they may not feel self-worth because they’re comparing themselves to what they see on Instagram. They’re also getting ideas on the internet about how to harm themselves.”

Dr. Carter says social media and sites like YouTube have made self-harm almost acceptable. She says children are looking to those avenues to find out how many pills to take or other ways they can attempt suicide.

“A lot of kids will research how much medication to take to not wake up,” said Dr. Carter. “I would say 99% of the overdoses we see have some over-the-counter component.”

Since January, 31 children have been admitted to Cook Children’s for ingesting too much Benadryl. At least three of the Benadryl overdoses are linked to a TikTok challenge, but the majority of cases were among patients intending to harm themselves. Other drugs commonly found in medicine cabinets such as Tylenol, aspirin and ibuprofen are also frequently used.

So why do children and teens take these drastic measures?

“When people feel like they're not going to get better and there's no way out, they tend to go to these levels,” Dr. Carter explained. “I think the biggest thing is hopelessness. When kids feel like they don't have anyone to talk to, they don’t feel like they can communicate with their parents or they’re getting bullied and they don’t have a social circle. Some kids also are struggling with gender and sexual identity.”

About 30% of the children assessed by Cook Children’s Behavioral Health Center report issues with gender or sexual orientation. Among those are patients diagnosed with gender dysphoria, a feeling of discomfort or distress that can occur when someone feels their gender identity differs from their sex.

“There are some kids who physically don't feel comfortable in the body they're in and they don't feel that they relate to the other girls or the other boys. We see this occur a lot around age 10,” said Dr. Carter. “A lot of times parents feel like it's a phase, and that might be true, but I would encourage parents to not minimize it because kids can begin to feel hopeless.”

She suggests parents keep an open mind, listen to their children and get them in to see a licensed professional counselor. And she says it’s ok to not agree with their feelings, but to share those thoughts with your spouse or a friend instead of the child.

“If you're resistant to it, your child's going to shut down and that can cause a whole realm of depression, hopelessness and not wanting to be alive anymore,” she said.

With COVID-19 and social distancing, spotting signs of depression and hopelessness can be challenging. Things that may have seemed out of the norm in the past, like avoiding social activities, may not be so odd now. But Dr. Carter says watching for changes in behavior is still key.

“Most kids still want to play video games and have their cell phones, so if they don’t want a new video game and all they want to do is sleep, you’re going to want to assess where that change is coming from,” she said.

Other signs of depression to look out for include:

• Declining grades
• Lack of concern about appearance and hygiene
• Changes in eating and/or sleep
• Self-injury such as cutting
• Less motivation
• Alcohol/drug use
• Acting highly anxious or agitated
• Recklessness

If you feel your child needs help, please talk to your pediatrician or call 682-885-3917 for a referral to Cook Children's Behavioral Health Center.

Surgery teams from the two hospitals joined together in Lubbock on Monday to perform two cardiothoracic procedures on pediatric patients. The partnership is part of an initiative to make treatment more convenient for patients and families in Lubbock and surrounding areas.

“Cook Children’s and Covenant Children’s developed a partnership, which allowed Cook Children’s to come to Covenant and perform procedures on a recurring basis,” said David Gray, D.O., chief medical officer of Covenant Children’s.

Vincent Tam, M.D., medical director of cardiothoracic surgery at Cook Children’s, performed both surgeries at Covenant Children’s. He traveled to Lubbock this week, along with seven other members of the Cook Children’s team. With the help of the surgical team from Covenant Children’s, Dr. Tam repaired the hearts of two children, including that of four-year-old Adrian Rosalez. Adrian was born with a vascular ring, a malformation of the aortic arch in the main blood vessel leading from the heart that partly or completely encircle the trachea or esophagus. Thanks to the collaboration between Cook Children’s and Covenant Children’s, Adrian is now recovering at home in Lubbock.

“Heart surgery is not a simple thing, I can’t take my suitcase of instruments, come to West Texas and do surgery," Dr. Tam said at a press conference at Covenant Children’s on Tuesday. "Heart surgery requires a large team of people, it requires a significant collaborative effort.”

Without this partnership, Adrian and his family would have had to travel to Dallas/Fort Worth, or another major medical hub to receive his surgery.

Covenant Children’s and Cook Children’s formed the joint partnership between the two hospitals in 2018. The plan allows Cook Children’s surgery team to perform cardiothoracic procedures on pediatric patients at Covenant Children’s once every quarter.

Gabriel was diagnosed with Acute myeloid leukemia (AML) and admitted to Cook Children's in November. Over the past six months, he has spent Thanksgiving, Christmas, New Year's and his birthday in the hospital. Now that he's accomplished his goal of walking an ULTRA marathon, Gabriel has set his sights on going home, which could happen at the end of the month. 

Miles in Motion is an incentivized walking program at Cook Children's, which rewards patients with gift cards for miles walked during treatment. The program is part of a larger initiative called Exercise is Medicine, which encourages patients throughout the hospital to stay active. 

Lauren, who was diagnosed with leukemia in 2017, said Poehler was funny, encouraging and relatable. For about 40 minutes, the two talked about their families, favorite TikTok videos and staying at home during quarantine.

Since being diagnosed with cancer, avoiding germs and public places has become a part of life for Lauren. Poehler asked the teen if she had any advice for those of us who are struggling with the new changes in the world.

“You find the things that calm you down and relax you,” explained Lauren. “Spend time with your family, that’s what I do and it’s got me through some bad times.”

The teen also told Poehler about her dreams of becoming an anesthesiologist, which she attributes to her experience as a surgery patient at Cook Children’s.

“Medicine is so cool,” Poehler told Lauren during the chat. “I’ve talked to a lot of kids who have to go through a lot of procedures and they get interested in medicine because they have experience with it that a lot of young people don't, and they see how they could make a difference. It's really cool.”

Lauren asked Poehler questions about everything from her career path to what it’s like being an actress and comedian. She also asked Poehler what inspires her. Her answer: working mothers.

“Moms who have to work and raise kids, especially during these times. There’s a lot of mothers who are working hard,” Poehler said. “I’m also very inspired by health care workers who are in the trenches and can’t see their own families because they have to be safe. I’m very inspired by people who put their lives on the line, risk their lives for people.”

Last month, Children’s Miracle Network Hospitals named Poehler a CHANGEMAKER, which is an exclusive list of celebrities, influencers, corporate leaders and advocates who have positively impacted children’s health. According to the organization, the individuals and groups named have made a difference in the health and well-being of children, specifically sick and injured children treated at children’s hospitals across North America. 

“We’ve really had to change the way we do things,” said Jill Koss, director of Family Support Services and Child Life at Cook Children’s. “The goal of Child Life is to help patients and their families work through any fears and anxieties they have about being in the hospital, and giving them tools to cope with that fear. For patients that may find themselves in isolation due to Covid-19 testing, we are meeting many of those needs virtually.”

Cook Children’s Child Life Zone (CLZ) is now using its closed TV station, CLZ-TV Channel 2, to connect with patients. They’ve ramped up their broadcasting schedule, now hosting several game shows a day which allow patients to call in from their rooms to play along. CLZ is also teaming up with Hear Fort Worth, a division of Visit Fort Worth, to bring the magic of music straight to patient rooms.

“Through Hear Fort Worth, we’ve started collaborating with the local music community to bring free, virtual concerts to patients and families,” said Rayne Delgado, program coordinator for the Child Life Zone at Cook Children’s. “The response from our patients has been great. They especially enjoy being able to interact with the artists.”

Concerts are streamed via Zoom with the artist performing from their home while answering questions from the patients via Instagram or a special phone line.

“We are honored to work with the tremendous staff at Cook Children’s Medical Center,” said Mitch Whitten, executive vice president of marketing and strategy at Visit Fort Worth. “Music can inspire and bring hope during trying times and we are grateful to our local musicians for donating their time and talents. Music is an integral part of our city’s culture.”

Three concerts have occurred thus far featuring artists Jack Barksdale, Jessi England and Grady Spencer with more being planned.

“The COVID-19 pandemic has created many unique challenges for Cook Children’s, including how to help kids feel like kids while social distancing in a hospital room,” said Koss. “This partnership with Hear Fort Worth gives our patients and families a chance to momentarily set aside the medical challenges they’re facing, and feel a little more connected through music.”

Musicians interested in performing may contact Child Life Zone Program Coordinator Rayne Delgado or Hear Fort Worth leads Tom Martens and Hillary Dupriest for more information. Visit www.FortWorth.com/Music to learn more about the local music community and how you can support.

“That’s when Dr. Slappy lets one rip,” Monday jokes, as they head to the fourth floor at Cook Children’s Hospital in Fort Worth.

The short ride gives them a moment to warm up before they make the rounds.

“I don’t know what you’re talking about,” Riley says, as one long, fart sound goes off from somewhere in her pocket.

“Yeah, it’s just the worst place to do that,” he says.

Full story here. 

They’re now making face shields to be used by clinical staff at Cook Children’s who are caring for patients with COVID-19 symptoms.

“We looked at the situation we’re facing, in the community and internally, and thought this is a great opportunity for us to get engaged,” said Brady Gendke, Vice President of Operations at Cook Children’s Home Health. “Right now, we’re producing about 20 face shields a day, which will help with some of the more intense COVID-19 isolation procedures that our doctors and nurses will be doing.”

With the help of a high-powered 3-D printer, the team is assembling the shields by hand. They hope to produce up to 200, which will be distributed to doctors and nurses at Cook Children’s Medical Center. Since the shields are made entirely of plastic, they can be properly cleaned and re-used, eliminating the risk of running out.

“It’s very important (to produce these shields) because you can help people survive and protect their health,” said Kirill Kirieiev, manager of the orthotics and prosthetics lab at Cook Children’s Home Health. “Then they can continue serving our patients and feel more protected. If we can accomplish this goal and make their life a little bit safer, that’s most important.”

The Home Health team is also creating cloth masks for Cook Children’s staff and visitors. Working in an assembly line, employees are stitching about 200 face masks a day. Earlier this week, Cook Children’s announced a new policy requiring staff, patients and visitors to wear masks at the medical center and other Cook Children’s locations. The masks produced by the Home Health department are being distributed for this purpose.

“It’s a great opportunity for us to give back in a different way,” said Gendke. “Home Health is often on the end of the spectrum as kids go home from the medical center. This is an opportunity for us to help kids going into the medical center, as well as other staff that are engaged in patient care.”

“I really appreciate that I can help people,” said Kirieiev. “That’s very important. We can improve our community and help our patients, and now doctors too. I’m really proud to be part of the system.”

“Our Joey likes to move at his own pace,” said his mother Denise Belles.

Joey arrived at Cook Children’s in June of 2019. What his family thought were headaches from recent growth spurts and allergies turned out to be a rare form of cancer called pineoblastoma. A tumor was growing in his head and spinal fluid was building up in his brain.

“At the time, he was going to football camp and loved it. Then we did the CT scan and within days, we got the diagnosis that changed our lives forever,” said Denise.

On July 3, Cook Children’s neurosurgeon Daniel Hansen, M.D. removed Joey’s tumor. Luckily, Dr. Hansen was able to get the entire mass at once. From there, Joey began a strict regimen of proton radiation therapy. In November, he was admitted to Cook Children’s Bone Marrow Transplant Unit to begin stem cell chemotherapy.

“It was really hard on his body,” Denise said. “You deplete them (patients) of everything and start from scratch. But the doctor said to Joey ‘You don’t have a shot if you don’t have the right attitude.’ So we came up with a plan and no matter what, we were going to be positive about it.”

Part of the plan came together after a visit with a physical therapist. She asked Joey to start walking and told him that if he kept track of his progress, he could win a gift card once he hit 10 miles. The incentive is part of a new program at Cook Children’s called ‘Miles in Motion’ which encourages hematology/oncology patients to get moving.

“When I first got here, I was sick and I was moving pretty slow,” said Joey. “We started walking the first day, but I could only do two laps.”

Joey would log his walks on a piece of paper in his room. Soon, the papers began piling up as he started making multiple laps around the unit.

Physical therapist Lydia Robey was part of the team that came up with the idea for ‘Miles in Motion’ as part of a quality and safety initiative to get patients out of their beds and exercising.

“We were brainstorming how to increase activity for this particular group of patients and one of our dieticians pointed out that these kids were losing muscle mass at a far greater rate than they should,” said Robey. “Some of that was due to inactivity, as well as steroids and medications that cause muscle atrophy. We started reviewing the literature and the evidence just became overwhelming of how important exercise is.”

Robey said due to varying blood counts, patients are not always able to do resistance exercise. However, she says walking is always good.

“Everyone agrees that walking is safe, so we wanted to find a way to motivate and empower families and patients to start walking as part of their daily routine,” explained Robey.

Joey and his parents did just that. They committed to walking each day during his four separate hospital stays, which spanned between two and four weeks each.

“For about a week, I did two to four laps a day and then I started getting to 10 and I thought ‘Wow, this is good!’ and then I started doing 20,” Joey exclaimed.

Before he knew it, Joey was walking more than 30 laps at a time, a feat that seemed impossible when he first started.

“There really is a noticeable difference between the first time I saw him and how he is now,” said Haleigh Schreck, one of Joey’s physical therapists. “He walks every single day on his own, no matter what he’s going through treatment-wise. His drive and motivation are very impressive.”

Last week, Joey hit a milestone that not even his physical therapists thought was possible. Joey marked off his 26^th mile in the ‘Miles in Motion’ program, which is equivalent to walking an entire marathon. Walking a marathon was never even a goal for Joey or for the ‘Miles in Motion’ program, but as he got closer to mile 26, he knew he had to go for it.

“We were just like, we’re this close to getting a marathon and I decided ‘I’m gonna do this,’” said Joey.

On Thursday, Feb. 20, Joey made his final laps around the unit were he’d been walking for the past four months. This time, nurses, child life specialists and physical therapists lined the walls. They held up handmade signs and cheered him on. With just five laps to go, Joey took one step at a time, thanking his mom and dad for their support as they finished the journey together.

At the final lap, excitement built as the medical staff cheered his name. “Joey, Joey, Joey!” they chanted until breaking into a loud roar as Joey ran through the finish line, a paper streamer strung across the hallway.

He did it. Joey walked a marathon.

“It was awesome,” he said basking in the wonder of his achievement. “I could have never done it without my family, the whole team we have. Everyone has been so supportive of me. It’s just truly amazing what we have done, me and my parents.”

This wasn’t the first marathon completed by a member of the Belles family. Denise ran the New York marathon in 2010, but she said this one was much better.

“This one is more rewarding,” Denise said. “His training was harder. I definitely feel more fulfilled with his than mine. It means so much more.”

If that wasn’t enough, finishing a marathon wasn’t Joey’s only major accomplishment of the day. It was also his final day of chemo.

“In the beginning, I really thought this was going to be devastating,” said Joey. “But everyone has been helping me and pushing me. With them, I knew I could get through this and do it with power.”

While he did have a supportive family and medical team, Joey also did what his doctor advised and had the right mindset throughout his cancer journey.

“Joey has been an amazing patient to work with,” said Haleigh. “I can’t remember a time when he wasn’t just smiling and having the most positive attitude. He blew all of our expectations out of the water.”

“I’m so proud of him. It shows how if you have the right mindset then you can overcome anything,” his mom said.

With his treatment coming to an end, Joey and his family are making plans for the future. They’re downsizing to a smaller home so they can take more trips together. This summer, they hope to go to Italy.

“We’re a close-knit family. We just love being together, but this has brought us so much closer,” said Denise. “We don’t want to wait to do stuff, like travel, anymore. We enjoy each other and we don’t take anything for granted.”

By Daron Aldridge

For Heather Giattini, RN, Cook Children’s holds a special place in her heart. Less than two years ago her two-and-a-half year son, Brooks, had his first open-heart surgery to address his aortic stenosis (a narrowing of the heart’s aortic valve). It was then that she witnessed firsthand the power of the love and caring Cook Children’s staff and physicians give to their patients and families.

Even though she was a nurse in the adult hospital world at the time, she no more got home from discharge, looked at her husband Matt and said, “I HAVE to work there!” The opportunity finally presented itself and Heather joined Cook Children’s as a cardiovascular surgery nurse earlier this year.

Her desire to work here is simple. She explains, “I wanted to be a part of making people feel the way they made me feel. From our doctors – Dr. (Vincent) Tam and Dr. (Lisa) Roten – to the entire staff that took care of us, it was all amazing. This is where I knew I belonged.”

It wasn’t just Heather who belonged here. As fate would have it, following a recent routine checkup with Dr. Roten, his parents were faced with the reality that a now 4-year-old Brooks would need another surgery. Even though they had hoped it would be years before he would need another surgery, Heather and Matt found solace in the fact that they knew Cook Children’s was the place Brooks belonged also.

But this time, the surgery would be a little different. Thanks to organ and tissue donations and the hand-in-hand work of Cook Children’s and CryoLife, Brooks would be getting a new valve in his heart that will hopefully mean this is the last surgery this young boy will need for decades.

The tissues, like the ones that are helping save Brooks’ life, are donated by families, who have lost loved ones and want to bring joy and hope out of their loss. Through CyroLife, these donations are cryopreserved for 10 years. This means they are able to positively influence and possibly change the lives of children, who aren’t even born yet. When these families make such a decision to be organ and tissue donors, they truly do “Donate Life.” Please visit donatelife.net to learn more about the life-saving importance of the selfless act of organ and tissue donation.

To celebrate the monumental impact such donations can have on patients, Brooks is the first proud recipient of the Donate Life: Recipient pin from CryoLife. The pin, along with similar pins that surgeons and nurses wear, are a quick way to show the world that organ and tissue donations can save lives.

As Brooks’ dad Matt said, “Most people think about the large organs when they think about donation but tissue donations may be small in size but can have a huge impact on lives.”

Life as a parent with a child who has Sickle Cell Disease (SCD) is already frightening enough, but could you imagine this diagnosis with two of your kids?

Mykhia and Malik, now 11 and 12 years old, were diagnosed with SCD within the first two years of their lives. When the family first learned of the diagnoses, they were referred to the Hematology and Oncology department at Cook Children’s.

Their mother, Monique Hammon, was familiar with the disease as it already ran in her family. She knew Malik and Mykhia would eventually need the cure of a bone marrow transplant.

“On my dad’s side, I grew up watching my family deal with sickle cell and a majority of them died from it,” Monique said. “My sister’s son went through the same thing that Malik and Mykhia went through, except he didn’t have a sibling that could donate bone marrow.”

Malik began to have more and more SCD crises, an acute pain episode that occurs when the sickle-shaped blood cells start to clump in the blood stream, and was frequently hospitalized at Cook Children’s.

Monique watched her children struggle to act like kids. They couldn’t play sports or swim due to the frequent crises and health problems, such as signs of stroke and organ failure.

“Mykhiah never had an episode. Her eyes would stay yellow, but one day her spleen swelled up and she had to have it removed,” Monique said.

Siblings typically have the highest chances of becoming potential bone marrow donors, but only 30 percent of families can find a match. Malik and Mykhia’s oldest brother was eventually tested to determine if he could be their cure, and he was.

“They [Malik and Mykhia] had a donor match,” Monique said. “I just thank God that my oldest son was a match for both of them instead of them waiting for a donor to come.”

Mykhia received her transplant first in 2015, due to signs of stroke on her MRI test results while Malik received his in 2016. The siblings can now swim and play soccer without fear of potential crisis.

“While Stem cell transplant can provide a cure for Sickle Cell Disease, it is not an easy cure. There can be many complications. Some patients may not engraft, meaning the donor cells may not grow, and the patient’s own cell grow back instead or a second transplant is needed," said Clarissa Johnson, M.D., medical director of the Sickle Cell Programt at Cook Children's. "There can also be challenges with finding a donor. So unfortunately we cannot consider stem cell transplant to be a universal cure that is available to all with the disease. More research for a universal cure is needed. There are small trials with gene therapy being done currently which I hope will prove successful to offer the chance of cure to even more people with Sickle Cell Disease.”

SCD is the abnormal shaping of red blood cells. The red blood cells are shaped like crescents instead of circles. They don’t last long and they can get stuck in the blood vessels, which blocks the blood flow, often resulting in pain and organ damage.

Approximately 100,000 Americans have Sickle Cell and an estimated 3 million Americans carry the trait, which can be passed onto their children.

Among the many misconceptions of SCD, African Americans are not the only race affected by the disease. While the African American race makes up a reported 60 to 80 percent of Americans diagnosed, people of Indian, Middle Eastern, Hispanic and Mediterranean descent may also be affected.

The cure for SCD lies in bone marrow transplants, and while siblings typically are the best matches for this disease, anyone willing to donate can be tested.

An estimated 3,000 people die each year in the United States from waiting for a donor for a bone marrow transplant because of the lack of donors on the registry.

Donating bone marrow requires less than five percent of bone marrow cells and is typically taken from the hip of the donor or through a non-surgical procedure in which it is collected through an IV.

Pediatric Palliative Care (PPC) has been a board certified subspecialty in pediatrics sponsored by the American Board of Pediatrics since 2008. PPC has been a specialty service at Cook Children’s Medical Center (CCMC) since 2007. Palliative care is widely misunderstood by many medical professionals, as well as the general public. While many believe that palliative care is synonymous with end of life care or hospice care, this is not entirely true. Palliative Care is a specialty service that helps care for any child and their family living with serious and potentially life limiting complex chronic conditions. Hospice care is along the continuum of palliative care. All hospice is palliative care, but not all palliative care is hospice. The PC team is grateful to become involved as early as diagnosis and at any time along the disease trajectory including in the midst of therapy with curative intent. The role of the palliative care team is to help with symptom management (caused by disease or treatment), medical decision making and to support families through the uncertainty of serious illness.

The PPC team at CCMC is comprised of physicians, nurse practitioners, nurses, social workers and chaplains. The team collaborates with child life specialists and other supportive services available at the medical center. The PPC team works alongside the child’s medical team to alleviate the suffering of the child and family. We address not only physical suffering (pain, shortness of breath), also psychological (anxiety, depression), social (isolation, financial stress) and spiritual suffering of the child and their family.

We have worked with hundreds of children with serious, complex chronic diseases and assist with anticipatory guidance and medical decision making along the disease trajectory. For example, the family of a child with swallow dysfunction associated with neurologic impairment may be faced with a decision of whether or not to pursue gastrostomy tube placement when aspiration continues despite other means of prevention. The PC team helps to facilitate informed decision making along the disease trajectory in hopes of preventing the need to make critical decisions in times of crisis.

If you have a patient that you feel might benefit from Palliative Care services, you may speak directly to our nurse coordinator, nurse practitioners or physicians to ask questions or make a referral. We can see patients in both the inpatient setting and in our outpatient clinic. PPC does not admit children to the hospital and we do not primarily manage the patients. We work with the primary care providers and the child’s other specialists to ensure that the child is receiving care that is consistent with the family’s goals of care and that we are looking at the whole picture and not just individual systems.

Ryan, 10 years old, wondered if he would ever get the chance to play the game he loves so much after a rare neurological movement disorder call dystonia changed his young life. He went from being a rough and tumble multi-sport athlete to using a wheelchair to get from class to class in his elementary school.

Ryan became the 100^th patient at Cook Children’s to receive deep brain stimulation(DBS) surgery on Monday, Nov. 30, 2015. The surgery was performed by John Honeycutt, M.D., Cook Children’s medical director of Neurosurgery.

Nearly two year later, it’s hard to imagine this little boy once struggled to walk or hold a pencil in his right hand. The successful DBS surgery has brought him back to the normal the Conder family knew before DBS robbed him of his childhood for more than a year.

“I’m the happiest mom in the whole wide world,” Kayla, Ryan’s mom, said. “When he first got diagnosed we were shocked and it was really hard because we had to have help with almost everything. But now he doesn’t need help or want help. I’m just so excited and really amazed. I’m very thankful because he’s like he was before.”

Last year as Ryan his family wait out in the lobby for their appointment, Dr. Honeycutt happens to walk by on his way into the Jane and John Justin Neurosciences Center. After a couple of steps, he realizes who he has passed and stops in his tracks. He comes back to say hello and marvels at the success of Ryan’s surgery.

“It’s a modern medical miracle,” he tells Kayla.

Then it’s time for a visit with Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s. He sees Ryan every three months.

Ryan spent significant time with Dr. Marks before and after surgery at the Cook Children’s Motion Lab, which is equipped with technology that enables a specialized team the ability to analyze the unique movement of each individual patient and plan a treatment plan for them.

Ryan goes through a routine checkup with Dr. Marks. Then they go out to toss a rubber ball to each other. Dr. Marks leaves the game for a bit and gets a reflex hammer that he uses as a make-shift bat. They are having fun and both are in a great mood.

“This is so rewarding. This is why you have a DBS program because you get kids like this," Dr. Marks said. They come back to being completely normal kids. They come back to doing everything they were doing before the surgery. Everything they want to do. It’s perfect.”

Ryan has been cleared to play baseball, basketball and at recess. He’s not allowed to play contact sports like football or soccer. But he does take his football to school to play catch.

His friends call him the robot because of the surgery that includes two battery-operated pulse generators, much like pacemakers, implanted near the collarbone. Ryan doesn’t mind the nickname at all. He kind of enjoys it.

He shows his friends a video Cook Children’s made as it followed Ryan toward his surgery last year. And what do they say?

“They are like, ‘Wow. It’s amazing what modern technology can do these days,” Ryan said.

Did we mention he’s a really funny kid? Even during his worst days, he maintained his sharp sense of humor. But now the smiles come much easier to everyone in the household and even the tears aren’t so bad lately.

“When he was looking at the video the other day, every time I watch it I cry because I get to see where he was and where he is now,” Kayla said. “It’s not crying because I’m sad. It’s crying because I’m happy. I tell him, ‘Ryan I love watching it but it makes me cry.’

Kayla noticed something was wrong with her little boy around September, 2014. She noticed Ryan running differently than normal during one of his baseball games.

When asked what was going on, Ryan said he couldn’t help it. Then after noticing that his toes on his right foot were curling in, Kayla took her son to the family doctor.

Kayla remembered she had cousins who had dystonia and called her aunt to talk to her about it. After the conversation, Kayla arranged a referral to see Dr. Marks.

Dr. Marks commented that Kayla reminded him of someone and then as they talked, he found out that one of her cousins was not only a dystonia patient, but the first one that Dr. Marks treated at Cook Children’s who had deep brain stimulation surgery performed on her. The surgery was done 15 years ago before Cook Children’s began its own DBS program.

After an initial diagnosis, Dr. Marks verified that Ryan had a genetic version of dystonia.

Dystonia is a disabling disease and sometimes painful condition that limits children in many ways, impacting motor, cognitive and social development. Because medications have a limited effect on most forms of dystonia, Cook Children’s began a Deep Brain Stimulation Program of its own in 2007.

Kayla admits to being scared and nervous at the unknown of surgery. But after talking to Dr. Marks and his team, she hoped this would be a fresh chance for Ryan to return to the little boy he was before dystonia began to take over his body.

Ryan walked with his right foot on his toes and his right arm is now curled in, making it difficult to use. She hoped for Ryan to be able to walk and run like before, but also to use his right hand to write. He had to dictate his work at his elementary school.

Kayla said the hardest part was watching the things Ryan could do and how active he was, playing sports and being a typical little boy, to where he needed help walking, taking a shower or cutting up his food.

But that was then. Now Ryan is back to being the fun-loving, sports playing, ornery little boy he was before the surgery.

“The best part of all this … he’s right there,” Kayla said pointing to Ryan. “He’s walking, running and jumping. He’s able to take care of himself. No parent ever wants to see their child go through what Ryan went through. But hands down, we got more than we ever imagined.”

Learn more:

• What Is Deep Brain Stimulation?
• What Is Dystonia?
• The architect: Warren Marks, M.D.
• The surgeon: Helping kids like his own
• Cook Children's Motion Lab
• Cook Children's Movement Disorders Program

Four-year-old CJ was known for temper tantrums and holding his breath when he was upset. But one morning while getting ready for school, CJ threw himself on the floor and began screaming and crying. When his legal guardian Rachelle Lipka saw what was happening, she immediately realized this time something was different.

“I stood him back up and was hugging him and he was hugging me back, but he was only hugging me with one arm,” Rachelle said. “I asked him what was wrong and he wouldn’t answer me so I pulled him away to look at his face and he was still crying, but his mouth looked crooked.”

Although she had doubts her 4 year old could have a stroke, Rachelle was aware of the symptoms and took CJ to their local hospital in Cleburne, Texas. Physicians made the decision to transfer CJ by ambulance for an MRI at Cook Children’s.

“It was like we were watching him deteriorate right in front of us,” Toliver Lipka, Rachelle’s husband and also CJ’s legal guardian, said. “A lot of people were preparing us for the worst.”

Depending on where the stroke occurs within the brain, recovery will differ in every case. However, receiving treatment quickly can help limit a stroke’s damage. Currently, 80% of children who have suffered a stroke will have some type of neurological deficit resulting from the stroke, according to Marcela Torres, M.D., a Cook Children's hematologist and oncologist and co-medical director of the Stroke and Thrombosis Program.

“It just changed so fast. I was with him at our [local] hospital and he was normal besides his smile,” Rachelle said. “By the time the MRI was over he wasn’t talking, he was drooling and his sentences when he did try to talk were jumbled. We couldn’t understand him.”

A high percentage of childhood strokes can be traced to cardiac disease, blood vessel disease or sickle cell disease, although some families can be left without an identifiable cause.

CJ was diagnosed with focal cerebral arteriopathy, which is linked to inflammation and is often found in chickenpox (varicella). But it can also be linked to other infections through a virus, Cook Children’s nurse practitioner Jo Tilley said.

“He always had a runny nose, but he goes to daycare so we just thought he was sick. The neurologist told me there’s often a link between pediatric stroke and viral infections,” Rachelle said

Once diagnosed, doctors use a stroke scale to determine the extent of damage, which allows the neurology team to plan a course of treatment.

“The stroke scale is a quick way to focus in on the symptoms that a stroke causes, to quantify the symptoms and determines the stroke severity,” said  Fernando Acosta, M.D., a neurologist and co-medical director of the Stroke and Thrombosis Program at Cook Children's. “The stroke severity will determine what acute interventions may or may not be appropriate for the patient, and it’s a way to follow the patient’s progress.”

CJ’s stroke was considered severe and he needed admission to the Neurological Intensive Care Unit before he started speech, occupational and physical therapies at Cook Children’s Rehabilitation Unit.

“Even though there has been lots of progress in the treatment of adult stroke, there are huge gaps in pediatric stroke treatment,” Dr. Torres said. “Fortunately, there’s a lot of ongoing research in pediatric stroke and Cook Children’s remains at the forefront of it.”

CJ stayed in the pediatric ICU for a week until he was cleared for physical, occupational and speech therapy. A month later on his fifth birthday, he was released from the hospital.

Childhood strokes can impact various motor and cognitive functions, some patients can have both depending on treatment and severity of the stroke.

“If you didn’t know he was a stroke victim, you’d never be able to tell. He has a bit of paralysis and walks with a brace, and he’s switched to being left-handed because it’s a bit of a struggle to use that right arm,” Toliver said. “We can only tell because we’re around him every day”

Rachelle and Toliver recognized an immediate change in CJ’s personality after his stroke and said it was as if they had to get to know a new child. Before CJ’s stroke, he was argumentative and his guardians said he seemed just like a little adult, but six months post-stroke he has fewer tantrums and acts like a typical kid again.

“Depending on the location of the stroke, there can be personality or behavior problems, there can be motor problems such as incoordination, weakness, increased muscle tone, abnormal movements and visual disturbance,” Dr. Acosta said. “If it’s a larger territory stroke then you have any combination of those. We usually see a combination of these changes in kids with these deeper strokes.”

Although CJ is still experiencing some weakness on his right side, his ranch animals are helping him with his own version of physical therapy back at home.

“We have a small ranch and he helps us work on it now. He works hard,” Toliver said. “When we got back from the hospital he went straight to the fence to meet his donkey. He helps me steer the tractor, and that’s really helped with his physical therapy.”

While they would never have imagined CJ would have a stroke, Toliver and Rachelle felt at ease knowing he was a member of a different type of family at Cook Children’s.

“The team in the PICU were just angels,” Toliver said. “They took care of CJ like I had never seen anyone do before. In addition to that, they made sure we were always comfortable. It was just the best experience that could have come from this as far as being in a hospital.”

As CJ continues to recover, his guardians are amazed by his progress and resilience.

“He’s our hero. He’s a superhero,” Toliver said. “CJ is just so unique, he changed our lives.”

- By Ashley Parrott