Lucas had trouble speaking, walking, and reading. Testing showed his IQ had plummeted. He couldn’t figure out how to close the pizza box. This, after being named Student of the Year in his first year at his first U.S. school.
“We were seeing doctors in Washington, DC, and they told us we were going to lose him, but that they couldn’t help.” said Reed. “They said, ‘Go to Duke.’” They did, immediately. Lucas had been sick for four years at this point.
Reed, Quinones, and Lucas met with Dr. Heather Van Mater, MD, a pediatric rheumatologist and Dr. William Gallentine, DO, a pediatric neurologist. “They came in with a box full of medical records,” said Van Mater. Immediately, she saw red flags — including the seizures and the sudden drop in IQ — that didn’t fit with a psychiatric diagnosis.
After test results were reviewed, the diagnosis was confirmed: Lucas had Hashimoto encephalopathy, a rare, and often misdiagnosed autoimmune disorder that causes brain inflammation.
“The psychological symptoms with this disorder can be so prominent that it is hard to see beyond that,” said Van Mater. “Some patients don’t have the classic signs of brain inflammation, so it is difficult to diagnose.” Even when imaging of the brain is performed, the inflammation doesn’t always show up.