American Academy of Pediatrics publishes guidance for post-COVID-19 conditions in children and adolescents

The American Academy of Pediatrics (AAP) recently published guidance to provide pediatricians with direction when caring for patients – aging in range from infants to adolescents – following a SARS-CoV-2 infection.

This guidance covers follow-up care to monitor the resolutions of COVID-19 symptoms; administration of COVID-19 vaccines and other routine immunizations; screening for and addressing mental health concerns; advice for participation in group sports and outings; and coordinating care with specialists if needed.

AAP’s guide suggests that all patients who test positive for a SARS-CoV-2 infection – whether symptomatic or not – should have at least one follow-up conversation or visit to their primary care physician.

Depending on the severity of the patient’s infection, an in-person visit may be recommended. For mild or asymptomatic cases, a follow-up visit may be done via telehealth phone call or video.  

During the patient’s evaluation, the pediatrician should discuss the following:

  • COVID-19 vaccination
  • Return to daily living
  • Return to sports or physical activity
  • Return to camp
  • Return to childcare, school (K-12) and higher education
  • Multisystem Inflammatory Syndrome in Children (MIS-C) 

The AAP also developed interim guidance on COVID-19 testing for children and adolescents who were previously SARS-CoV-2 positive and are advising against serum testing for antibodies.  

Outside of the acute illness, the following are some of the ongoing or residual symptoms known to occur following a SARS-CoV-2 infection:

  • Respiratory
  • Cardiac
  • Anosmia and/or Ageusia
  • Neurodevelopmental
  • Cognitive fogginess or fatigue
  • Physical fatigue/poor endurance
  • Headache
  • Mental health/behavioral health sequelae

Children and adolescents with underlying medical and behavioral conditions who experienced COVID-19 should be monitored using a team-based approach. Their primary care pediatrician should coordinate care with medical, surgical, occupational and behavioral specialists as needed.

Studies have shown that children and adolescents – like adults – may experience “long-haul COVD-19” symptoms months after experiencing an infection. Pediatricians should consider a conservative approach to testing and diagnostics if symptoms persist.

Read AAP’s full article, “Post-COVID-19 Conditions in Children and Adolescents.”

CHOC to launch pilot study on speech therapy app that UCI students helped develop

The CHOC Research Institute plans to launch a pilot study on a pediatric speech therapy application that senior undergraduate students at UC Irvine’s School of Information and Computer Science (ICS) developed this past academic year.

CHOC sponsored the students’ work under the supervision of Professor Hadar Ziv, an associate professor in the Informatics Department at the Donald School of Information and Computer Science, and Dr. Brian Cohn, Ph.D., co-founder of Adventure Biofeedback and a former student of CHOC Chief Scientific Officer Dr. Terence Sanger.

Dr. Terence Sanger at CHOC
Dr. Terence Sanger

The app, Amplify, is designed to make speech therapy more engaging, convenient, and interactive for both clinicians and patients by utilizing an adventure game. Amplify hosts a comprehensive library of interactive, audible adventure exercises to improve speech skills that are embedded in the storyline. Amplify is designed for children with cerebral palsy and other mental and emotional disabilities. The app enables parents, caregivers, and clinicians to watch and document the progress of improvement in speech.

The UCI students, all ICS majors, designed exercises for established voice therapies and designed the analytical voice data collection on the pitch, volume, and clarity of pronunciation. The students who worked on the project were Jennifer Kwon, Sharifa Jesmin, Eduardo Magdaleno, Michael Collins, and Brian Cantell. Students recently gave a demo of the app on a video call with Ziv, Cohn, and Christopher Laine, co-founder of Adventure Biofeedback, and a team of managers at the CHOC Research Institute.

Computer, phone and tablet screens show images of characters from the Amplify app.
Examples of the app, Amplify, from the Adventure Biofeedback website.

“I’m impressed with what they developed,” Cohn said. “These students worked with us virtually during COVID, which is also impressive.”

Said Laine: “This project stands out as excellent. It takes the burden of motivating patients off the shoulders of the clinicians.”

Around 8 percent of U.S. kids ages 3-17 were diagnosed with a communications disorder in 2012, according to the students’ presentation. One-half of these children received speech-language therapy.

Tools like apps have an important role in pediatric patient care, given their availability, scalability, and access – and especially as telehealth continues to explode. The most effective apps are ones that can be customized to each pediatric patient and fit with their personal care/treatment goals and needs. Amplify has all the digital pieces needed for success, its designers say.

Dr. Sanger said the app has another benefit.

“Members of underserved populations, particularly those of low socioeconomic standing, are less likely to receive speech-language pathology services,” said Dr. Sanger, a professor of electrical engineering and computer science at the UCI School of Engineering, and vice dean of research, pediatrics at UCI. 

“Pediatric patients deserve the opportunity to experience success whether it is through expanding research, improving auditory processing, or correcting sound errors,” Dr. Sanger added. “Technology development in speech and language services to families unable to afford therapy is important. Children with special health care needs are often at a disadvantage when it comes to accessing services.”

CHOC supports health equity and promotes culturally effective care, and recognizes that health disparities pose a threat to children from marginalized populations. For these reasons, closing gaps in health and health outcomes is important.

Research Institute officials believe the student project will help CHOC reach more families.

The design and prototypes that this student group produced were thoughtful and sophisticated, Dr. Sanger said.

Learn more about CHOC Research Institute.

CHOC MI3 Innovation Day 2021 celebrates novel advances past and present

We can’t be just good at this. We have to be great.

The late Dr. Nick Anas was known for this inspiring catchphrase, and CHOC leaders fondly recalled his contributions to innovation and medical intelligence at a recent webinar celebrating novel advances past and present.

CHOC Innovation Day 2021, held June 25, began with remarks by President and Chief Executive Officer Kimberly Cripe.

“Our providers and associates have always been problem-solvers focused on advancing pediatric care and enhancing our services to our patients and their families,” said Cripe, who cited population health initiatives, mental health care, and CHOC’s “phenomenal response” to the COVID-19 pandemic as examples.

“Nick was a passionate advocate for positive change,” Cripe remarked. “His inspiring legacy is reflected in the numerous ways we continue to advance our mission.”

CHOC’s late Pediatrician-In-Chief, Dr. Nick Anas

Never giving up

The 90-minute virtual event, open to all CHOC physicians and associates, highlighted such innovations as an app to help parents with children with autism spectrum disorder establish daily routines and an augmented reality module to ease patients’ anxiety about undergoing magnetic resonance imaging (MRI).

“Innovators never give up,” said Dr. Anthony Chang, chief intelligence and innovation officer at CHOC and leader of the CHOC Sharon Disney Lund Medical Intelligence and Innovation Institute (MI3).

“(Dr. Anas’) positive energy about anything that seemed impossible or difficult was just mind-blowing,” Dr. Chang added. “He had the curiosity and wonder of a 5-year-old.”

Dr. Anas, CHOC’s former director of pediatric intensive care who died April 3, 2018, recruited an initially reluctant Dr. Chang 17 years ago.

Dr. Chang said CHOC’s culture of continually striving to go beyond to provide the best possible care to patients and their families provides inspiration on a daily basis.

Challenging the status quo

CHOC pediatric intensive care unit medical director Dr. Jason Knight, after showinga video tribute to Dr. Anas, said telemedicine and genomics are two examples of how CHOC has been ahead of the curve in pushing the boundaries to best take care of patients.

“Nick challenged the status quo,” Dr. Knight said. “He really saw the future.”

Joe Kiani, founder and chairman and CEO of Masimo and a member of CHOC’s board of directors, said CHOC is obsessed with doing what is best for its patients, and “solutions come out of that obsession.”

Kiani’s Irvine-based global medical technology company develops and manufactures innovative and noninvasive patient monitoring technologies.

“Both Masimo and CHOC are like that, and this happens because of the dedication of both organizations’ people,” Kiani said. “We both constantly ask, ‘What’s the best thing we can do for children?’

Involving frontline workers

Tiffani Ghere from the MI3 leadership team shared a thank you video from several of the officers of the International Society of Pediatric Innovation (iSPI), an organization launched by MI3. She then introduced guest speaker Dr. Todd Ponsky, a pediatric surgeon and director of clinical growth and transformation at Cincinnati Children’s Hospital, spoke about what innovation means to him.

Dr. Ponsky said it’s critical to involve frontline workers in the process.

“Frontline clinicians are key to making sure innovation works,” Dr. Ponsky said.

Across the enterprise

Debra Beauregard, director of MI3, pointed out that at CHOC, innovation is happening across the enterprise, with new ideas coming from nurses, technology leaders, doctors, and others. She invited CHOC innovators to share their exciting projects to inspire all associates to unlock their inner innovator. 

Nurse Scientist Jennifer Hayakawa spotlighted a new virtual reality app called A Heroes Journey VR that will help adolescent and young adult patients in the hospital combat feelings of isolation and anxiety.

The app is designed to enable patients to become heroes of their own stories and share their struggles and challenges with other patients.

In other examples of innovation at CHOC, Dr. Sharief Taraman shared his Move D device, which is currently being tested in the clinical setting to help improve fine motor skills for children with cerebral palsy.

Adam Gold, CHOC’s chief technology officer, partnered with the Innovation Lab to create uTine, an app that helps build daily routines for children with autism spectrum disorder.

“We are gamifying building up life skills,” Gold said.

Pediatric gastroenterologist Dr. Ashish Chogle, in partnership with veteran nurse Wanda Rodriguez, an instructor in the CHOC HElps program, has created an app, CareXR, that immerses parents in a virtual reality world that trains them to care at home for kids with medical devices such as gastric tubes, tracheostomy tubes, PICC lines, and central venous catheters.

CHOC Chief Health Information Officer Dr. Bill Feaster and Louis Ehwerhemuepha, a data scientist in the department of healthcare informatics, discussed an algorithm that they recently deployed at CHOC that uses data science and artificial intelligence to reduce hospital readmission rates. The tool helps staff better identify patients more at risk for readmission.

Dr. Chang and data scientist Howard Lei presented their imaging data sharing project, currently underway, spotlighting the importance of collaboration in data science.

Dr. Feaster and Dr. Chang noted the importance of making data accessible to those who need it and coming up with actionable items resulting from such data.

Data by itself means very little,” Dr. Feaster said. “Data with data science applied to clinical care is what we really are all about.”

CHOC Vice President for Research and Chief Scientific Officer Dr. Terence Sanger said research and innovation are very closely intertwined but are distinct.

“Researchers ask, ‘What do you want to do?’ while the role of an innovator is to ask, ‘How are you going to do it?’” said Dr. Sanger, a physician, engineer, and computational neuroscientist who also is vice chair of research for pediatrics at the UCI School of Medicine.

Added Dr. Sanger: “Innovation requires looking at the bigger picture. We need more of that thinking in science, to ask, ‘Which problems are the biggest to address?’”

MI3 closed the event with a message from Dr. Chang.

“While we know that innovation in pediatrics can be challenging, as long as we build on our culture of innovation at CHOC, unlocking our inner-innovators, we will continue to advance care for the children and families that we serve,” Dr. Chang said.

Watch video of CHOC Innovation Day 2021

Infectious disease specialist’s research on coronavirus at OC schools to be recognized in leading journal

Dr. Chulie Ulloa, a pediatric infectious diseases specialist on CHOC’s medical staff, has been selected as an Early Career Investigator (ECI) by the prestigious journal Pediatric Research for her leading role in a study of coronavirus transmission rates at four Orange County schools.

Dr. Ulloa, also an assistant professor in the Department of Pediatrics at the UCI School of Medicine, was a multiple principal investigator of the seminal study, whose key finding was that within-school transmission of SARS-CoV-2, the virus that causes COVID-19, was limited in the K-12 population. That finding debunked early fears about widespread coronavirus transmission at schools.

Being selected as an ECI will raise the profile of Dr. Ulloa’s work and win her wider recognition in her field.

Dr. Chulie Ulloa, pediatric infectious diseases specialist

Her article, “SARS-CoV-2 Acquisition and Immune Pathogenesis Among School-Aged Learners in Four Diverse Schools,” will be published in the November issue of Pediatric Research, along with a brief biography.

Dr. Dan Cooper, who treats kids with lung conditions at CHOC and who serves as director of UC Irvine’s Institute for Clinical & Translational Science, was the other multiple principal investigator of Dr. Ulloa’s paper, a collaboration between CHOC, the Orange County Health Care Agency, and UCI.

“What a tribute to the team’s fantastic effort and to the collaboration between CHOC, OCHCA, and UCI,” Cooper said.

At the start of the COVID-19 pandemic, schools were reflexively closed as there were fears that aggregation of school-aged children would lead to increased infection. Infectivity and immunobiology of SARS-CoV-2 in children attending schools was not yet understood.

What the work of Dr. Ulloa and others adds is that school-associated infections reflected regional rates rather than remote or onsite learning, and that successful mitigation was implemented across a diverse range of schools. In addition, the paper found that reduced immune mediator concentrations coupled with robust humoral and cellular immunity may explain the milder symptoms in school-aged children.

But the work is not over.

With the rise of new SARS-CoV-2 variants, and with safety and efficacy studies of COVID-19 vaccines just beginning in children less than 12 before the complex process of approval for emergency use on a widespread scale, the reopening of schools scheduled just weeks away will be challenging.

“The research done by the CHOC-UCI-OCHCA team is a model of how physicians, scientists, and community partners can come together to face even the most daunting challenges,” Dr. Cooper said.

CHOC Vice President for Research and Chief Scientific OfficerDr. Terence Sangerhas called Dr. Ulloa a rising superstar in the field of pediatric infectious disease research.

“Dr. Ulloa is the perfect example of the type of clinician-scientist who will make a huge difference for our patients and our children’s health now and in the future,” said Dr. Sanger, a physician, engineer, and computational neuroscientist who also is vice chair of research for pediatrics at the UCI School of Medicine.

“We are so pleased that she is working with CHOC and UCI, and that she is helping to strengthen the connection between these two institutions that both care deeply about improving the health and lives of children,” Dr. Sanger added.

Dr. Coleen Cunningham, senior vice president and pediatrician-in-chief at CHOC and chair of the UCI Department of Pediatrics, agrees.

“Dr. Ulloa is a rising star physician scientist who contributes greatly to children at CHOC and UCI,” Dr. Cunningham said.

Pediatric Research is the official journal of the European Society for Paediatric Research, the American Pediatric Society, and the Society for Pediatric Research, and is overseen by the board of the International Pediatric Research Foundation, an organization composed of members of the three societies.

Dr. Ulloa said she is honored to be recognized as an ECI in Pediatric Research.

“I also want to emphasize that none of this would have been possible without the remarkable efforts of our team across CHOC, UCI, OCHCA, and the dedication of the faculty and staff at our local schools,” she said. “Together we worked tirelessly and persevered during an anxiety-provoking and uncertain time at the height of the pandemic to ultimately produce much-needed data on COVID-19 in children.” 

Virtual pediatric lecture series: Cardiology

CHOC’s virtual pediatric lecture series continues with a lesson on cardiology.

This online discussion will be held Wednesday, July 28 from 12:30 to 1:30 p.m. and is designed for general practitioners, family practitioners and other healthcare providers.

Dr. Sanjay Sinha, pediatric cardiologist at CHOC, will discuss several topics, including:

  • Accurately diagnosing and refering patients with cardiac symptoms related to the current coronavirus pandemic.
  • Identifying new therapy and guidelines as they pertain to your patient populations.

This virtual lecture is part of a series provided by CHOC that aims to bring the latest, most relevant news to community providers. You can register here.

CHOC is accredited by the California Medical Association (CMA) to provide continuing medical education for physicians and has designated this live activity for a maximum of one AMA PRA Category 1 Credit™. Continuing Medical Education is also acceptable for meeting RN continuing education requirements, as long as the course is Category 1, and has been taken within the appropriate time frames.

Please contact CHOC Business Development at 714-509-4291 or with any questions.

CHOC intraventricular hemorrhage and hydrocephalus patient accepted to medical school

Twenty-four years ago, Dr. Michael Muhonen, who had started his pediatric neurological practice at CHOC only a year earlier, treated a baby born with what essentially was a traumatic brain injury.

The infant boy, born at 23 weeks and weighing 3 pounds, suffered an intraventricular hemorrhage – bleeding inside and around the ventricles, the spaces in the brain containing the cerebrospinal fluid.

It was a grade-four bleed – the worst. Dr. Muhonen gave the boy an 80-percent chance of having some form of serious neurological dysfunction such as cerebral palsy. The newborn also had hydrocephalus, which required a shunt to be implanted in his head to drain excess fluid to his abdominal cavity.

That baby, Eric Rhee, is now 24.

Recently, over coffee, Eric talked about his plans this year: He’s moving to Bethlehem, Penn., to attend the Temple/St. Luke’s School of Medicine.

“Wow, I would never have predicted this,” Dr. Muhonen says, with a wide smile. “I’ve seen many grade-four bleeds in infants, but I don’t recall any who have succeeded to the degree that Eric has.”

Eric, who since summer 2019 has been working as a medical scribe at CHOC and, with Dr. Muhonen, on a research paper on shunts like the one that will stay in his body for the rest of his life, is a bit surprised himself.

Of being accepted into medical school, Eric says: “I just want to be consistent, reliable, and efficient at what I do, learning from superiors who spent years upon decades refining their craft.”

Dr. Muhonen attributes his remarkable recovery, in part, to the high-quality neonatal care that Eric received during his three-month stay in CHOC’s NICU as an infant.

“The odds were extremely stacked against him,” Dr. Muhonen says. “He’s unique. It speaks to the kind of person he is that he’s been able to graduate from high school and UC Berkeley with honors and go on to medical school. I’m humbled that I could be a minor part of his journey.”

Dr. Michael Muhonen

Shunts like the one Eric has for his hydrocephalus typically get replaced every five years due to corrosion and other issues. Eric had his replaced only once when he was a child, and it wasn’t until December 2016 when he had to have it replaced again. Dr. Muhonen, who has seen Eric regularly over the years, consulted with neurosurgeons at a hospital near UC Berkeley before the decision was made to replace the entire shunt.

After graduating from UC Berkeley in 2019, Eric started working at CHOC while studying for the MCAT.

“One of the things I liked about CHOC growing up, I always felt like I was at home,” Eric says. “Even though I felt like I was in a very vulnerable place, I was always at ease.

“They’re kind and really good at what they do,” he says of CHOC clinical and related staff. “I want to be like that, too. Everyone at CHOC is a master of their own craft and essential to accomplishing a bigger objective. Every person is important.”

Eric took the MCAT in January 2020 and found out in December that he got accepted into Temple/St. Luke’s School of Medicine.

Dr. Muhonen has no doubts Eric will make a great doctor.

“It will be a physician like Eric who will make a great discovery,” he says. “Instead of relying on a shunt to treat hydrocephalus, maybe he’ll make a discovery to obviate the need for a shunt and have the brain internally drain water on its own somehow.”

Says Eric: “I just want to be trustworthy and dependable while making meaningful connections and having an impact on others.”

Learn more about CHOC’s Neuroscience Institute.

Boy, 9, showing great progress after deep brain stimulation procedure at CHOC

Ryder Montano is the third and youngest CHOC patient with a movement disorder to undergo a procedure called deep brain stimulation (DBS), which is designed to ease involuntary movements by sending electrical currents that jam malfunctioning brain signals. CHOC treated its first DBS patient in late 2020.

Ryder is also among CHOC’s dramatic DBS success stories.

The procedure is being championed by DBS pioneer Dr. Terence Sanger, a physician, engineer, and computational neuroscientist and vice president, chief scientific officer at CHOC, and vice chair of research for pediatrics at the UCI School of Medicine. The DBS team also includes Dr. Joffre E. Olaya, CHOC’s functional restorative neurosurgeon, who implants the electrodes, as well as collaborating partner Dr. Mark Liker, a neurosurgeon at CHLA.

In January 2021, Ryder underwent surgery at CHOC to replace four electrodes in his brain that help ease the severity of a movement disorder, post-pump chorea, that he developed after he had open-heart surgery at age 2 ½. Since those four electrodes were replaced, he has shown remarkable improvement, Ashley says.

“It’s just incredible and mind-blowing that this is happening because of DBS,” she says.

Ashley says Ryder’s clinical team at CHOC had expectations that were lower than what the outcome turned out to be. They thought his condition would worsen before it got better.

But in February 2021, for a post-op appointment, Ryder walked into Dr. Sanger’s office for the first time by himself. He also stood on a scale and sat in a chair without assistance.

Ryder was diagnosed with Williams Syndrome and a heart defect at age 2. After undergoing open-heart surgery, he developed post-pump chorea, which causes involuntary twitching or writhing.

Now, Ryder also can walk independently, feed himself, and sit down and watch a movie. He is limited verbally and uses an AAC (augmentative and alternative communication)device to say simple things. 

“I’m so happy to see how well Ryder is doing,” Dr. Olaya says. “This procedure has tremendously improved his quality of life.”

Answers at age 2

Ryder was born full term on Sept. 29, 2011. He had a heart murmur, but his mother, Ashley, didn’t get a lot of answers from Ryder’s cardiologist until their son was 2. That’s when doctors at another hospital determined that Ryder had been born with supravalvar aortic stenosis (SVAS) and Williams Syndrome.

SVAS, a heart defect that develops before birth, is a narrowing of the large blood vessel that carries blood from the heart to the rest of the body.

Williams Syndrome is a rare genetic condition that affects many parts of the body. It is caused by missing more than 25 genes from a specific area of chromosome 7. Williams Syndrome can cause mild to moderate intellectual disabilities, unique personality traits, distinctive facial features, as well as heart and blood vessel problems.

Ryder’s Williams Syndrome led to him undergoing open-heart surgery at 2 ½, which in turn led to post-pump chorea, which causes involuntary twitching or writhing.

“He was walking and talking and drinking from a cup prior to surgery,” Ashley recalls. “He woke up one day and wasn’t able to sit up or hold his head up or make eye contact. He made weird movements. I first thought it was withdrawal symptoms from the medications he took for the surgery.”

Ryder first saw Dr. Sanger in 2016 at CHLA (Dr. Sanger came to CHOC in March 2020). Ryder’s first DBS surgery was in 2017, the same year he got four permanent electrodes. One of the leads got entwined with a growing bone, which prompted the January 2021 surgery to replace all four electrodes.

The perfect team for Ryder

Ashley and her husband, Al, are determined to provide Ryder with the best quality of life possible. His DBS treatment at CHOC, they say, has made a huge difference.

“Ryder and Dr. Sanger were a perfect match,” Ashley says. “I’m very thankful for DBS and Dr. Sanger. I feel he thinks outside of the box. There are so many other neurologists who think, ‘Oh, let’s just load (the patient) up with medication.’ But Dr. Sanger wants to get at the root of the problem and fix it.”

Ryder loves to go to the beach and on nature walks. At the beach, he will roll into the shallow waters on a stroller with large, fat wheels.

Dr. Olaya stressed the importance of teamwork in treating Ryder and other DBS patients at CHOC.

“We are so fortunate to have the resources and the team here at CHOC to offer DBS treatment to patients with moving disorders,” he says. “Jennifer MacLean, Ryder’s nurse practitioner, is very involved with his care and treating other DBS patients as well. It’s not just one person. It really is the nurses, the OR staff – it’s a lot of people collaborating.”

“I’m so thankful for everybody at CHOC,” Ashley says. “I just feel that without the entire team, none of this would be possible for Ryder or for really anybody. It makes me so happy to know we’ve not only improved Ryder’s life so much, but we’re helping improve other kids’ lives, too. Dr. Sanger goes the extra mile and it’s so amazing to think, yes, that’s our doctor.”

Ashley says Ryder has worked very hard to get to where he is today.

“We’ve all worked hard together to get to this place and give Ryder the validation to show him how much we realize how hard he’s been working,” she says. “I know it’s defeating for a kid who understands but can’t communicate well, but he’s working very hard.”

Learn more about CHOC’s Neuroscience Institute.

First batch of awardees announced for new Chief Scientific Officer small grant program

When Dr. Terence Sanger started at CHOC in January 2020 as its first vice president for research and chief scientific officer, one of his priorities was to “Go Beyond” by making the CHOC Research Institute more robust.

One example of how he’s going about that is a new small grant program he’s funding that is open to all CHOC associates, staff, and faculty with principal investigator (PI) status.

The first batch of awardees in the CSO Small Grant Program, which launched in the third quarter of the current fiscal year, has been announced. Research projects of the winning applicants – 12 of 23 were awarded funding – range from virtual reality training for autism caregivers to racial and ethnic influences in adolescent obesity to the use of artificial intelligence to predict COVID-19 and related diseases.

The amount of all grants totaled $589,365, with recipients receiving up to $75,000 each, says Aprille Tongol, CSO Small Grants Program administrator. In the coming fiscal year, Dr. Sanger, a physician, engineer, and computational neuroscientist who also is vice chair of research for pediatrics at the UCI School of Medicine, will award a total of $1 million in CSO grants, Tongol says.

The CSO Small Grant Program aims to develop promising new research, expand current research activities, and encourage collaboration internally and externally with CHOC research partners. The program promotes and supports CHOC researchers who aspire to leverage research to improve the quality of care, patient outcomes, and well-being for children.

Virtual reality training and autism

Casey Clay, PhD,director of the Behavior Program at the Thompson Autism Center (TAC), was awarded a grant for a project that will examine if a newly developed virtual reality (VR) simulation using behavioral skills training (BST) is effective for training parents of children with autism who exhibit challenging behavior.

Clay says VR simulation is an improvement to typical training because it may increase skills of trainees without exposing them, or individuals with Autism Spectrum Disorder (ASD), to risk such as aggression, property destruction, etc.

Clay’s project builds off previous research he did at the University of Missouri, where he worked before joining CHOC in January 2020. That prior project involved training pre-clinical students to work with kids with autism. Clay’s CHOC project will do the same for parents or caregivers of children with ASD.

“Using the simulation, parents will follow training methods to engage with a virtual avatar and try to say and do the right things and arrange the environment in the right way,” Clay explains. “The idea is to work collaboratively with parents to build their skills at increasing appropriate behavior, and modifying the environment to decrease challenging behavior.”

Clay’s one-year project will begin in August 2021. He plans to sign up 16 teams of parents/children and measure pre- and post-skill levels of the participants, as well as assess parents’ acquired skills with live children during intervention sessions.

“This VR simulation will give parents the opportunity to practice and get immediate feedback from a clinician,” Clay says. “And it’s the practice that makes behavioral intervention effective over time.”

Clay praised the launch of the CSO Small Grants Program.

“It’s a great opportunity to jump start a lot of research,” he says.

Adolescent obesity study

Dr. Uma Rao, director of education and research in psychiatry at CHOC, was awarded a grant to study obesity in adolescents in the African-American, Hispanic/Latina, and Non-Hispanic White female population. The goal of the study is to reduce racial/ethnic health disparities and morbidity and mortality in this population, says Rao, also a professor and vice chair for child and adolescent psychiatry, psychiatry, and human behavior at the UCI School of Medicine.

Adolescence is a critical period for the development and life-long persistence of obesity, a public health epidemic with a range of short- and long-term medical and psychosocial problems and earlier death, Dr. Rao notes.

Her CSO grant is supplemental to a parent grant funded by the National Institutes of Health (NIH). That study, which Rao began in 2018, is assessing biobehavioral processes and social/environmental factors associated with obesity risk from a multi-dimensional perspective in the African-American, Hispanic/Latina, and Non-Hispanic White female population.

The aim of the CSO grant is to identify early stages of liver fibrosis and type 2 diabetes in these samples and assess whether inflammatory biomarkers serve as risk mechanisms for these two obesity-related disease outcomes. 

Knowledge regarding the underlying mechanisms of obesity-related disease burden among high-risk groups will be helpful in early detection and developing effective personalized interventions, thereby reducing racial/ethnic health disparities, morbidity and mortality associated with the obesity epidemic, Dr. Rao says.

Ultimately, she says, the goal is to enroll 300 participants in the study – 100 from each of the three ethnic groups. Participants will range in age from 13 to 17.

“We hope this research ultimately leads to the development of more personalized interventions for these groups to reduce disparities, which cause real havoc,” Dr. Rao says.

List of grant awardees

The second group of awardees of CSO grants was notified on Monday, June 21, 2021.

Here are the 12 recipients of the first round of CSO grants with a brief description of their projects:

Lisa Murdock, RN — Evaluation of a Nurse-Administered Screening Tool to Identify Victims of Child Trafficking in Patients with High-Risk Chief Complaints in a Pediatric Emergency Department

Dr. Autumn Ivy — Identifying Targetable Epigenetic Mechanisms of Early-Life Seizures and Exercise Intervention

Dr. Van Huynh — Utility of Antifungal Prophylaxis to Prevent Invasive Fungal Disease in Pediatric and Adolescent Patients with Hematologic Malignancy

Michelle Fortier, PhD — Opioid Prescribing Patterns in Pediatric and Young Adult Cancer Patients

Dr. Diane Nugent – COVID Antibody Response in Children: Protection and Risk for MIS-C and Late Effects

Dr. Suresh Magge — School-age Outcomes in Patients with Single Suture Craniosynostosis After Endoscopic-assisted Strip Craniectomy and Orthotic Therapy

Dr. Lilibeth Torno — Monitoring of Plasma Cell Free DNA BRAF V600E+ Mutations in Patients with Langerhans Cell Histiocytosis

Casey Clay, PhD — Virtual Reality Training for Autism Caregivers

Alexander Stover, MS — Derivation and Characterization of an NDUFAF5 Mouse Model for the Study of Mitochondrial Complex I Disorders

Louis Ehwerhemuepha, PhD — Artificial Intelligence for Prediction of COVID-19, MIS-C, and Juvenile Dermatomyositis

Dr. Theodore Heyming — Identification of Social and Environmental Determinants of Pediatric Health in an Emergency Setting and Referral Utilization

Dr. Uma Rao — Racial/Ethnic Influences in Adolescent Obesity: Risk Mechanisms for Disease Burden

CHOC’s growing thyroid surgery program can compete with the busiest centers when it comes to favorable outcomes, research shows

When Dr. Kevin Huoh arrived at CHOC in September 2013, the hospital wasn’t doing a lot in the way of thyroid surgeries and instead was referring out most cases.

A highly regarded pediatric otolaryngologist, Dr. Huoh has a special interest in thyroid surgery, especially thyroid cancer surgeries. So, working with endocrinologists at CHOC, he spearheaded a multi-disciplinary thyroid surgery program that steadily has grown since then.

Now, in a recently published research paper, Dr. Huoh and co-author Dr. Himala Kashmiri, a CHOC endocrinologist, have shown that the growing program at CHOC enjoys favorable outcomes comparable with those found at the nation’s largest-volume pediatric thyroid surgery centers.

“Other research papers and guidelines say in order to have the best outcomes for thyroid surgery, you need to do 30 surgeries per year,” Dr. Huoh says. “Fortunately, pediatric thyroid surgery is fairly uncommon. This makes it difficult for many newer thyroid surgery programs to achieve these numbers. Our study shows outcomes similar to those at higher volume centers.”

In the paper, published in early February 2021 in the International Journal of Pediatric Otorhinolaryngology, Drs. Huoh and Kashmiri studied 31 patients who underwent thyroid surgery at CHOC between 2014 and 2020. The numbers have grown from two to three a year to nearly nine, and are expected to continue to increase, Dr. Huoh says.

Key finding in the research paper: The 31 CHOC thyroid surgery patients, who ranged in age from 8 months to 20 years, experienced a rate of complications comparable to larger-volume pediatric thyroid surgical programs.

“Recent publications have advocated that patients in need of thyroid surgery should be referred to high-volume surgical centers, asserting that high-volume centers experience fewer complications,” the paper states. “In contrast to recent publications, our study demonstrates that low-volume and intermediate-volume thyroid surgery centers can achieve comparable results.”

A key reason why, according to the paper, is having a multidisciplinary team of pediatric otolaryngologists and endocrinologists, such as the team at CHOC.

Kids at greater risk of cancer

The thyroid is a gland that makes and stores hormones that help regulate the heart rate, blood pressure, body temperature, and the rate at which food is converted into energy.

The prevalence of thyroid masses in children is much lower compared with adults. But such masses in children tend to carry a greater risk of harboring malignancy compared with their adult counterparts. And thyroid surgery in the pediatric population is associated with a higher rate of complications than adult thyroid surgery.

Thyroid cancer is on the rise around the world, including in adolescents, Dr. Huoh notes.

“We saw a definite need for this program at CHOC,” he says.

Dr. Huoh works very closely with Dr. Kashmiri, a pediatric endocrinologist, in CHOC’s thyroid cancer program.

“When I first started here in 2015, as director of the thyroid cancer clinic program here at CHOC, our typical workflow was to find ENT surgeons for our patients in the community of Orange County or even Los Angeles,” Dr. Kashmiri says. “However, rather quickly as a pediatric endocrinologist who puts the patient first, I gained accelerated confidence with Dr. Huoh’s expertise, interpersonal skills, and poise to handle our simple-to-complex neck surgeries.

“This has been a game-changing experience for us to have a surgeon who we trust and value to take care of patients with excellent outcomes whom we recommend fully without any hesitation. I would just like to say thanks to Dr. Huoh for bringing his passion and commitment to CHOC and the children we serve.”

Scary experience, good outcome

In November 2019, Molly Pearce noticed a lump on the left side of her throat.

Then 13, Molly ended up at CHOC after a friend of her mother, Jacqueline, recommended going there and after Jacqueline did a lot of research.

“Dr. Huoh’s name kept coming up,” Jacqueline says.

Molly Pearce had her thyroid removed by Dr. Huoh in 2020 after discovering a lump in her neck.

 The two met with Dr. Huoh in January 2020.

“From the second we met,” Jacqueline says, “we knew we were going to love him. He’s got a great bedside manner. He’s reassuring. He’s thorough. He answered all our questions. He spent a lot of time with us, which isn’t always the case with busy surgeons. We definitely got the impression that he cared a lot.” 

In February 2020, Dr. Huoh removed one half of Molly’s thyroid.

The tumor was encapsulated, but pathology reports after surgery turned up concerning cancerous cells in the mass. Dr. Huoh went ahead with a second surgery, removing the second half of Molly’s thyroid in April 2020.

“It was a very scary time, especially during the pandemic,” Jacqueline recalls, “but CHOC offered us a broad range of resources should we want to reach out and get some support. COVID-19 added an extra layer of fear. I have to say we felt comfortable in terms of the level of cleanliness. Molly had to do COVID tests. I really feel it was a challenging time kicked up to a much more challenging time, and we still felt comfortable and safe and well cared for.”

Jacqueline praises Dr. Huoh’s skill as a surgeon.

“A plastic surgeon could not have done the incision as well as he did,” says Jacqueline, who explained that only a faint pink incision line remains on Molly’s neck.

“You wouldn’t even know she was worse for the wear,” Jacqueline says. “Everything about the care we got at CHOC, from pre-registration to when we got to the hospital, to the post-op follow-ups, was exceptional.”

With regular blood work and ultrasounds, Molly continues to be under the continuous care and careful watch of Dr. Kashmiri.

“He has a great way of communicating and empathizing with his patients in a comfortable setting,” Jacqueline says. “We know we are in good hands. He has truly been a blessing to us on our journey.”

Molly now is 15. She will need to be on a thyroid supplement the rest of her life, but says she feels great.

“I feel good but sometimes feel a phantom thing,” she says. “I feel like my thyroid is still there but it’s not. Overall, I feel amazing.” 

Molly, a freshman at Dana Hills High School who loves beach volleyball and yoga and is a member of the National Charity League, says she appreciates the personal touches CHOC provided went she went in for her surgeries.

Ties to nuclear medicine program

Dr. Huoh notes that some patients need radioactive iodine treatment after thyroid cancer surgery. Such treatment requires a nuclear medicine program. It’s fortuitous, he says, that construction is under way on space that will house CHOC’s first nuclear medicine program.

The new space, which totals some 4,000 square feet, is scheduled to open in fall 2021 in the Bill Holmes Tower at CHOC’s main hospital campus.

 Its opening will be especially important for patients undergoing thyroid surgery who now must go to other hospitals for radioactive iodine treatment, says Dr. Hollie Lai, a radiologist who will be in charge of CHOC’s nuclear medicine program.

“This will be a huge benefit to patients,” Dr. Lai says. “Many of our thyroid cancer patients now have to go to adult facilities.”

Such treatment involves giving patients medicine, usually orally, that has radiation in it that zaps away remnants of cancerous tissue following surgery. Thyroid surgery patients will be one part of CHOC’s nuclear medicine program, which will provide full-service therapies in addition to research.

She praises Dr. Huoh’s skills.

“He’s a great surgeon who relates very well to his patients,” Dr. Lai says.

Dr. Huoh has big hopes for CHOC’s thyroid surgery program.

“Our goal is to be one of those centers doing 30 or more surgeries a year,” he says. “It’s nice to be able to show great outcomes on our way to becoming one of the high-volume pediatric surgery thyroid programs.”

Learn more about CHOC’s otolaryngology program.

Read another recent example of research conducted by Dr. Kevin Huoh.

Surgeon, NICU nurse say their lifesaving professions have made them better fathers

The patient was 6, a boy – the same age as a pediatric general and thoracic surgeon Dr. Peter Yu’s son, “P.K.”

The patient’s kidney cancer had spread to his lungs.

When Dr. Yu recently performed surgery on the boy, he caught himself thinking of P.K., whose full name is Peter Kai Yu – a ball-sport-loving kid with grown-up tastes in food such as sushi.

“When I looked at him,” Dr. Yu recalls of the patient, “I saw P.K. I thought, ‘What would I do for my son?’ And I would do anything for him.”

With Father’s Day this Sunday, Dr. Yu and Gene Paredes, a neonatal intensive care unit (NICU) nurse at CHOC at Mission Hospital, reflected on the challenge of balancing their demanding and often emotionally exhausting work with fatherhood.

Both Gene and Dr. Yu are married with three children.

Both say their professions make them better fathers, and both say having kids makes them better at what they do.

Ample time with children

Gene has been a father almost as long as he’s been a nurse.

His son, Gabriel, is 20. Gene has been a nurse at CHOC for 21 years (23 years overall).

Gabriel is in college, as is his 18-year-old sister, Gillian. Gene’s other daughter, Eliotte, 14, just started high school.

Even though his parents both were nurses, Gene never grew up thinking he wanted to be one, too.

Gene Paredes, a nurse in the NICU at CHOC Mission, and his family

But the Mission Viejo native did just that, joining CHOC in 1999 after completing training for two years in a neonatal intensive care program in Berkeley.

Like his father, who worked three 12-hour shifts per week, Gene has been able to be involved in his kids’ lives because of his work schedule.

“Working three days a week,” Gene says, “I was one of the few dads who were able to be involved in mid-week classroom activities at my kids’ schools. That was kind of rare. You didn’t see a lot of dads there.”

Gene and his wife, Chantelle, who used to teach, decided that the benefits of her being a full-time mom outweighed the challenges of being a single-income family.  

And that decision has paid off.

Over the years, Gene and Chantelle have enjoyed travelling with their children.

They did an RV road trip up the coast to the Pacific Northwest and have been to various national parks and states throughout the U.S. Two years ago, they vacationed in Paris and London.

Gene and his family taking in the sites of England

At CHOC Mission, where for years he was the only male nurse, Gene works throughout the hospital because he has special training in placing PICC (peripherally inserted central catheter) lines, which are used to dispense medications and liquid nutrition. At CHOC Mission, he also performs ultrasound-guided IV placements.

For 2 ½ years, Gene also picked up shifts at CHOC’s campus in Orange in the main NICU and Small Baby Unit.

But he spends most of his time caring for sick babies in the NICU at CHOC Mission.

“I think being in healthcare, you realize there are a lot of things that can go wrong in childhood, such as illnesses and accidents,” Gene says. “I definitely had an appreciation for having healthy children. Knock on wood, I’ve never had to bring any of my kids to the hospital.”

Being a nurse has huge benefits when raising kids, Gene says.

“I approached fatherhood with a lot of confidence,” he says. “I taught my wife how to give our babies a bath. And she never worried about the kids getting sick. She was like, ‘Gene’s got this. He knows babies.’” 

Being a male and a father, Gene brings a unique presence to the NICU.

“A lot of the focus tends to be around the moms and the connection they have with their babies,” he says. “I think me being a male allows fathers to have someone to connect with. I change diapers, I feed the babies – I do all the hands-on things. I like to empower fathers to get in there and get very involved — to make them feel they can be as involved as much as the moms.”

Gene is known throughout the hospital for his calm demeanor in stressful situations.

“As a nurse and father, I hope that my calm energy and presence would bring comfort to parents experiencing the stress and unknowns of their child’s hospitalization,” he says.

On Father’s Day, Gene and his family will host a large afternoon feast with relatives at a favorite park in Dana Point.

“Then we’ll take a sunset walk on the beach,” he says.

Off cooking duty this Sunday

Dr. Yu usually relieves his wife, Jean, of cooking duties on weekends, when he’s off his hectic weekly work schedule that often totals 80 hours.

This Sunday will be different.

“I told him I would cook for him,” Jean says, adding: “He’s a very good cook.”

Being a former clinical nurse, Jean totally gets the demands of her husband’s profession.

“I get what the daily grind is like and things that may come up,” Jean says. “As a family, we try to cherish every moment, even just little things like watching a show together at the end of the day. He can’t make every event, but the kids are very understanding and very aware he’s probably helping out a sick baby or a sick kid, and they don’t hold that against them.” 

Dr. Peter Yu, a CHOC pediatric general surgeon and co-medical director of the Fetal Care of Southern California, and his family

The two met in the surgical ICU at the medical center at UC San Diego School of Medicine, where Dr. Yu completed his internship, residency, and research fellowship in general surgery. Jean was a surgical ICU and trauma nurse there, and they met while taking care of a very sick patient.

Married for 11 years, the Yus have three children: Max, 10; Sasha, 8; and P.K. They dated for two years before marrying. Dr. Yu proposed to Jean in Nigeria while both were on a surgical mission. 

Almost every day, Dr. Yu awakes at 4:30 a.m. to hit the pools. He’s an avid swimmer who will compete in the U.S. Masters Swimming National Championships in Greensboro, N.C., on July 26.

Max also loves to swim, and is a voracious reader.

“He’ll read a Harry Potter book in one day,” Dr. Yu says.

Sasha loves to dance and is a huge avocado fan.

Dr. Yu hits the sack around his kids’ bedtime.

“Usually 8:30 – 9 p.m. is really pushing it,” Jean says.

Dr. Yu says once he’s at home, he strives to be present with his children. Things have been even more hectic than usual at work recently, with the just-opened Fetal Care Center of Southern California, of which Dr. Yu is co-medical director.

“Our family works very well,” Dr. Yu says. “The credit really goes to Jean. She’s the chief operating officer of our family. I am so blessed to have her. She really allows me to work. Being a nurse, she knows how important it is for me to take care of these kids (at CHOC). She never gives me grief when I have to work, and that’s huge.”

Dr. Yu has been at CHOC for six years. Jean worked at CHOC for two years in the post anesthesia care unit (PACU).

“Jean was an amazing nurse,” Dr. Yu says. “I think she could have been a high-level nursing leader, but she sacrificed her career to follow me.”

Hospital work lends perspective to mishaps at home, such as a scraped knees, Jean says.

“Things that happen at hospitals can be completely life-changing for families,” she says. “So, when things happen at home, we don’t get too alarmed.” 

Dr. Yu and his son take it to the hoop with authority

Dr. Yu, whose parents emigrated to the United States in the 1960s, was born in America, and spent most of his early years in St. Louis, Mo. He has an older brother, David, also a physician, who adopted a boy from China who now is 10.

Dr. Yu says he became sold on California after attending Stanford University as an undergraduate, majoring in psychology.

It’s a good thing Dr. Yu has a ton of energy. He will need it to continue his balancing act of caring for sick and injured kids at CHOC and tending to his three young kids at home.

Says Dr. Yu: “You have to be present in the operating room, and you have to be present for your family.”