World Encephalitis Day 2025
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World Encephalitis Day celebration at Texas Children’s Hospital
Dr. Eyal Muscal, Division Chief of Rheumatology at Texas Children’s Hospital and Professor of Pediatrics at Baylor College of Medicine, shares a recent patient story in order to raise awareness for World Encephalitis Day.
When our patient, Nathan, was five years old, he had a seizure in his gym class in kindergarten. It was his first time experiencing a seizure and no one knew what triggered it. Nathan was rushed to the emergency room at his local hospital outside El Paso, TX, but doctors couldn’t determine the cause of the problem. Within a week, Nathan had lost the ability to walk, talk or even eat.
“He just completely lost control of his body, he couldn’t move,” Nathan’s mother told People magazine in a recent article that featured Nathan’s treatment journey at Texas Children’s Hospital.
Ultimately, Nathan was diagnosed with Anti-NMDA receptor encephalitis —more generally known as autoimmune encephalitis (AE) — which is a condition where an overactive immune system attacks the brain. Anti-NMDA receptor encephalitis is the most common type of AE that affects children.
In this condition, the body’s immune system inappropriately mounts a response that impairs and even damages parts of the brain. The true number of children with this disorder is unknown, yet in adults and children, it may be found in 1.5 cases per million, which amounts to approximately 4,000 new cases each year. This immune response can manifest as seizures, severe psychiatric disturbances, loss of language skills, confusion and deficits in learning and thinking.
At his local hospital, Nathan received first and second-line therapy in accordance with international guidelines. Yet his persistent seizures and worsening condition required specialized care.
A few days before his sixth birthday, Nathan was transferred to Texas Children’s Hospital in a comatose state.
The treatment
Nathan’s therapeutic journey at Texas Children’s highlights the challenges of caring for children with AE. In many ways, AE is a “stress test” for hospitals and health systems because the condition requires so much specialized care and collaboration — a close working relationship between inpatient pediatricians, rheumatologists, neurologists, infectious disease experts, psychiatrists and rehab specialists, among others. It truly requires a multidisciplinary approach. If a child is confused and suffering severe neurologic deficits, he needs to be stabilized in a state-of-the-art emergency center and often admitted in a neurology floor or intensive care unit. At the end of long admissions pediatric rehabilitation physicians may need to start the long road to cognitive recovery and educate families regarding gradual gains and coping mechanisms.
At first, Nathan wasn’t responding to steroids and immunotherapy treatments to reduce his inflammation and disruption of brain functioning. As a care team, all of us were heartbroken by how slow his recovery was progressing, and we had to constantly give ourselves, and Nathan’s family, pep talks that we weren’t done fighting. Thankfully, last October 2023, a particular form of chemotherapy started working for Nathan. By the end of the month, Nathan opened his eyes. In November, he was able to move his body on his own, and he was transferred out of the ICU on the day before Thanksgiving. In December, Nathan started talking again.
I’m happy to report that Nathan was discharged from Texas Children's Hospital on January 12, 2024.
Follow-up care
Our team subsequently assisted physicians in Nathan’s home city to continue his chemotherapy on an outpatient basis.
"Every day he's progressing. Every day he's getting better at doing things that he couldn't do," his mother told People. "Just being with his brothers at home, playing and talking and fighting, doing what brothers do, has helped him tremendously."
Recently, Nathan was able to return to school. He came off all maintenance immunomodulatory medications and has no remaining signs of disease. He has not relapsed in any way.
As Division Chief of Rheumatology at Texas Children’s, I couldn’t be more proud of our doctors, nurses and support staff who fought so tirelessly for Nathan and collaborated across disciplines to save his life. Cases like Nathan’s are a perfect example of what makes Texas Children’s so extraordinary. As the No. 1 ranked children’s hospital in Texas — and one of the world’s leading pediatric and women’s health care organizations — we meet problems head-on with innovative solutions. Nathan required a lot of champions working together, and that’s exactly what his care team was able to provide. They went above and beyond to make a life-changing difference for Nathan.
World Encephalitis Day
February 22 is World Encephalitis Day, the biggest day of the year for families whose lives have been impacted by all forms of brain inflammation. It provides a valuable opportunity to raise awareness about encephalitis and to educate the public and healthcare professionals about the importance of early detection, diagnosis and treatment. It’s also a great time to honor families and caregivers like Nathan.
Broadly speaking, encephalitis is inflammation of the brain, which can be caused by viral or bacterial infections or by immune cells mistakenly attacking the brain — as was the case with Nathan.
When infection is the cause, it’s known as infectious encephalitis. When the immune system attacks the brain, it’s referred to as autoimmune encephalitis (AE). In rare cases, the cause remains unknown.
Encephalitis is a very serious condition that can sometimes lead to death. Getting diagnosed and treated as early as possible is important to provide the best chance at recovery and avoid long-term deficits.
Symptoms
Encephalitis is often preceded by a viral illness, such as an upper respiratory infection, or a gastrointestinal problem, such as diarrhea, nausea or vomiting. The most common symptoms of encephalitis may include:
- Fever
- Headache
- Sensitivity to light and/or sound
- Neck stiffness
- Sleepiness or lethargy
- Increased irritability
- Seizures
- Skin rashes
- Difficulty talking and speech changes
- Changes in alertness, confusion, or hallucinations
- Loss of energy
- Loss of appetite
- Unsteady gait
- Nausea and vomiting
Keep in mind that each child will experience symptoms differently, and encephalitis may resemble other problems or medical conditions. Always consult your child's doctor for a diagnosis.
Early detection and treatment are key to treating encephalitis. A child with encephalitis requires immediate hospitalization and close monitoring. The goal of treatment is to reduce the inflammation and potential brain swelling as quickly as possible and prevent related complications. Medications to control the infection, seizures, fever or the immune system may be used. The extent of the problem is dependent on the type and severity of encephalitis and the presence of complicating factors. In severe cases, a breathing machine may be required. As the child recovers, physical, occupational or speech therapy may be necessary to help the child regain muscle strength and/or speech skills.
The difference is life-changing
As the largest pediatric hospital in the US, Texas Children’s has been treating children with autoimmune encephalitis for over a decade, utilizing the expertise of a wide range of specialists. We are one of the few hospitals in the nation to have a neurocritical care unit in our ICU, as well as a state-of-the-art inpatient rehabilitation unit. Our physicians and researchers have been driving breakthroughs in the field for many years. In fact, to help others, Nathan's family has agreed to participate in a research study we are currently conducting. All of us at Texas Children’s are incredibly happy for Nathan and his family and proud to honor him on World Encephalitis Day.
Learn more about the Texas Children’s Rheumatology Clinic and the Texas Children’s Neurology Clinic.
Schedule an appointment with MyChart or call 832-824-9322.
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