Micah Hullum was on the tail end of recovering from a mild case of COVID-19 in late December when he started experiencing brain fog and hallucinations that made him feel dazed and confused.
The 14-year-old couldn’t stand or think clearly and started hearing voices.
“He would be just in a daze, just staring,” said Keosha Street, Michah’s mom. "He said he heard a voice or voices in the garage. Then, he wouldn’t sleep."
Street said the first doctors who evaluated Micah thought he might have schizophrenia. That’s when she decided to get a second opinion at Duke University Hospital where doctors discovered swelling on Micah’s brain and diagnosed him with post-COVID encephalitis.
Micah spent 22 days in the hospital as doctors tried to figure out the best medication to treat his illness, Street said. He was bedridden and lost the ability to walk, talk and swallow.
“Not only did he have hallucinations, but his thinking was really different,” said Dr. Heather Van Mater, a pediatric rheumatologist at Duke Health.
Mater said encephalitis in young people is very rare and does sometimes get misdiagnosed.
“It’s not uncommon that it takes one or two times to a doctor’s office when you have something that is rare,” she said. “I encourage families to do what his mom did and say, ‘Something seems just not quite right. Things are not progressing like we would have expected for him getting better’ and to not be afraid to advocate to physicians. [Ask] ‘Have we thought about all the reasons this could be happening for him.’”
Micah was unresponsive for more than two weeks, but he was released from the hospital on January 22. Street said he has made a 100% recovery in the weeks since and has finished physical and speech therapy months ahead of schedule.
Street wanted to share her son’s story so other people experiencing similar symptoms know they are not alone.
“I believe in my heart — that the same way we were — there are a lot people who were misdiagnosed or they were not diagnosed at all. They were dismissed,” she said.
Encephalitis is a different diagnosis from MIS-C, which is a rare condition some children experience after a COVID infection that involves inflammation of the heart, lungs or other body parts.
The North Carolina Department of Health and Human Services reports nearly 7,500 cases of MIS-C with 63 deaths in people under the age of 21.
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