Tag Archive for: Yonts

Breaking free of illness: Experts explore solutions for chronic pediatric disorders

When new patients with chronic illnesses come to Roberta DeBiasi, M.D., M.S., division chief of Infectious Diseases, they are often drained of energy, far behind in school and fatigued by the lack of coordinated care among multiple specialists. She envisions a better way to care for these children: a data-driven, multidisciplinary clinic that can help diagnose and treat disorders facing chronically ill children.

In a keynote address, Dr. DeBiasi laid out her vision for improving care during the 7th annual symposium hosted by Children’s National Hospital and the National Institute of Allergy and Infectious Diseases (NIAID): “A new paradigm: Infection-associated chronic illnesses (IACI) affecting children.” Experts from across the country came together to discuss these IACIs, the importance of finding biomarkers to diagnose and monitor them, data-driven therapeutics to treat them, and the urgent need for protocols to guide physicians.

The patient benefit

A range of IACIs – including long COVID, Lyme disease, postural orthostatic tachycardia syndrome (POTS), dysautonomia and more – are stealing normal, active lifestyles from children. Dr. DeBiasi said patients need researchers who understand disease pathogenesis and have standardized disease classification to diagnose and treat these disorders. Because of the complexity of these cases, care delivery and coordination also need to change. Patients, she said, would best be served by beginning with a three-hour appointment in a multidisciplinary clinic with experts from behavioral health, rehabilitative medicine and other specialties.

“When one of these patients comes to us, we feel helpless as physicians,” Dr. DeBiasi said. “There’s no diagnostic, and we don’t know how to treat them…. It is, to me, very energizing that we’re going to be able to have a coordinated way to help these families. But to do that, we have to have standardized disease classification.”

Moving the field forward

In 2017, NIAID and Children’s National launched a clinical research partnership devoted to advancing the health of children with allergic, immunologic, auto-inflammatory and infectious diseases through collaborative research and education. The partnership — co-led by H. Clifford Lane, M.D., NIAID’s deputy director for Clinical Research and Special Projects, and Catherine Bollard, M.D., M.B.Ch.B., director of the Center for Cancer and Immunology Research at Children’s National — promotes the prevention, diagnosis, treatment and cure of these childhood diseases. Every year, the partnership organizes and funds a symposium to explore cutting-edge research and pressing issues in pediatric care.

At this year’s gathering, experts examined the specifics of various disorders, including Alexandra Yonts, M.D. She provided new data from the Children’s National Post-Covid Program and explained that patients “are clamoring” for help with symptom management.

“There have been virtually no randomized, controlled trials and very little evidence on any sort of aggressive treatments, or pharmaceutical management options, especially in the pediatric population,” Dr. Yonts said. “Upon recent attendance at some long COVID meetings, there is an expressed concern, especially among pediatric providers, about trying medications off-label in these long COVID patients.”

Miss the symposium? You can learn more about the science they explored in the symposium’s recording on topics including:

  • Potential overarching mechanisms of disease, including pathogen- and host-mediated factors.
  • Identifying potential biomarkers for chronic illnesses
  • Treatments and multidisciplinary approaches for patients with IACIs
  • Patient advocacy

Untangling the root of long COVID with research

Alexandra Yonts, M.D.

Understanding and treating long COVID is still in its early days, but Dr. Yonts is beginning to see trends, along with hope for symptom relief.

A child who forgets the alphabet or spends 20 hours a day on the sofa will get a pediatrician’s attention. In late 2020, a stream of post-COVID patients just like this started presenting in the clinic of Alexandra Yonts, M.D., an infectious diseases specialist at Children’s National Hospital. Dr. Yonts quickly recognized the need to understand these patients and worked with hospital leadership to open the Pediatric Post-COVID Program, putting her at the forefront of clinicians and researchers investigating the disorder.

Understanding and treating long COVID is still in its early days, but Dr. Yonts is beginning to see trends, along with hope for symptom relief. She will present detailed data from a retrospective study of 254 post-COVID patients at the 2024 Children’s National-NIAID annual symposium, A New Paradigm: Infection-Associated Chronic Illnesses Affecting Children. She’ll discuss her findings on the patients’ symptoms at presentation, trajectory over time and a cluster analysis of symptom grouping. She gave an overview of her research and clinical work to Innovation District.

Q: What are you seeing in the Pediatric Post-COVID Program?

A: In the Infectious Diseases clinic, we had historically seen about one patient a month with prolonged fatigue or other persistent symptoms after an infection. Yet when COVID started, we noticed an increase in those patients. By late 2020, the numbers were increasing significantly, along with an uptick in appointment requests. We knew we needed to start a Pediatric Post-COVID Program, which launched in May 2021.

From the beginning and continuing to this day, severe fatigue is the most common reason kids come to our clinic, as is the case with adults. This ranges from marathon runners who can’t run a half-mile to those sleeping on the couch for 20 hours a day. We’re still researching the factors affecting this wide spectrum of symptoms.

Cognitive issues — often referred to as brain fog — are also significant. These can be seen as attention issues, such as difficulty remembering the alphabet in younger children or focusing in class for older children. Many kids have gastrointestinal problems like nausea, vomiting and abdominal pain. There’s also a prevalence of dysautonomia, affecting functions like blood pressure and heart rate, often seen in conditions like POTS (postural orthostatic tachycardia syndrome).

Initially, we saw kids infected early in the pandemic who had symptoms for 15 to 20 months. Our peak referrals were in 2022 after the Omicron variant, when we had a six-month waitlist. Although COVID cases have decreased, we still see kids with long-standing symptoms who have seen multiple providers without success. That’s why we’re here.

Q: Where are we in our understanding of long COVID, and where do we need to go?

A: We have lots of data but don’t know how it fits together yet. Research shows ongoing immune reactions to viral particles, with some patients having spike antigen in their blood or stool long after infection. There’s also evidence of autoimmunity and endovascular dysfunction, but we don’t yet understand the connections. It seems like viral persistence might be the underlying problem, but we haven’t pinpointed it yet.

Q: How important is it for the community to come together for events like the Children’s National-NIAID symposium?

A: It’s absolutely critical. We need researchers, clinicians and patients to collaborate. Researchers bring scientific expertise, clinicians provide practical insights and patients share their lived experiences and priorities. Conversations like the Children’s National-NIAID symposium are crucial for collaboration, thoughtful study design, advocacy and building connections with the patient community to make them feel validated and heard.

Learn more at the Children’s National-NIAID symposium on Sept. 5, by registering here.

Children’s National/NIH team competes in #IDbugbowl

Dengue virus

IDBugBowl team member Maria Susana Rueda-Altez, M.D., hopes her knowledge of infectious diseases common to Peru, like dengue virus, will give her team an advantage.

It’s a bird. It’s a plane. No, it’s an infectious agent that zipped past country borders, infecting international passengers who shared the same commercial aircraft as a person who had symptomatic illness.

The buzzer rings. And the correct answer is: What is severe acute respiratory syndrome?

This fall, a combined team from Children’s National in Washington, D.C. and the National Institutes of Health (NIH) will compete against three other teams testing their collective infectious disease knowledge through IDBugBowl, a Jeopardy-style quiz geared toward fellows, residents and medical students. The competition is held during IDWeek2019. “From anaplasmosis to Zika, any topic is fair game,” according to organizers.

“BugBowl has become so popular that the IDWeek 2019 program committee carved out a separate time for the contest to ensure it would not conflict with any other symposia,” says Roberta L. DeBiasi, M.D., MS, chief of the Division of Pediatric Infectious Diseases at Children’s National. “On a day-to-day basis, we all contend with serious infectious diseases that have the potential to jeopardize human health. However, this event helps to expand knowledge among the general public in a fun and engaging way.”

The Children’s National/NIH team participating in the Oct. 5 trivia contest includes:

  • Kevin Lloyd, M.D., third-year pediatrics resident
  • Maria Susana Rueda-Altez, M.D., third-year pediatrics resident
  • Kanal Singh, M.D., fellow, adult infectious diseases at the National Institutes of Health (NIH) and
  • Alexandra Yonts, M.D., fellow, pediatric infectious diseases at Children’s National

Even though she has little formal training in infectious diseases, team member Dr. Rueda-Altez says: “One thing I have in my favor is that I’m from Peru. We’re used to seeing infectious diseases that are less common elsewhere, including tuberculosis and hantavirus.”

And while disease-carrying mosquitoes aren’t abundant at Peru’s higher altitudes, closer to sea level and in its rain forests, infected mosquitoes spread chikungunya, dengue, malaria and Zika, she adds.

Take this quiz to test your infectious disease knowledge.