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Nebraska Family Tells of Daughter's Terrifying Ordeal With 'Brain on Fire' Condition

Newsweek logo Newsweek 1/24/2020 Aristos Georgiou

A Nebraska couple have spoken of the horrifying ordeal their child went through as a result autoimmune encephalitis—a condition sometimes referred to as "brain on fire."

Omaha residents Christina and Brian Beck first noticed that something was wrong with their 14-year-old daughter Meredith in December 2018, KETV reported.

"I mean, it was horrific. We didn't know what was happening," Christina Beck told KETV. '[Meredith] said 'I sometimes feel really scared and confused, and kind of like I'm going really crazy.'"

Suspecting that Meredith was suffering from mental health issues, the Becks took her to see a psychologist, who prescribed the teen anxiety medications. However, these drugs did nothing to alleviate her symptoms and her condition began to worsen.

"She's starting to act lethargic, she started to say she was hearing voices," Christina Beck said. "She would feel like someone was touching her back and no one was there."

The couple said that Meredith began throwing up frequently and also had extreme difficulty getting to sleep.

"We had no idea what was happening and truly, the pediatrician didn't really know and the psychologist didn't know," Christina Beck said.

Then one day the family received a call from Meredith's school saying that she had been found in a catatonic state.

In response, the couple took her to get an electroencephalogram test (EEG), which measures electrical activity in the brain and can reveal whether patients are suffering from seizures.

However, the EEG did not reveal the source of Meredith's problem. With Meredith often relapsing into a catatonic state, the couple subsequently took her to other doctors. However, none could diagnose her condition.

Eventually, one pediatric neurologist—Dr. Mary Rickard—noticed a tumor the size of a "deflated football" on her left ovary.

"Immediately, when I saw her, I grew very concerned," Rickard told KETV.

She diagnosed her with autoimmune encephalitis, saying that the tumor was causing Meredith's immune system to attack her own brain. Specifically, it led her body to create antibodies that attacked her brain's NMDA receptors—the same receptors affected by the mind-altering drug PCP.

"Unless you know what you're looking for, it's sometimes difficult," Rickard said. "If it attacks NMDA, that's what the drug PCP works on. So think of a child acting like they're on PCP all day. That's what we're dealing with."

After discovering the tumor, Rickard booked Meredith in for surgery the next day to remove it, while also treating her with steroids and giving her a blood transfusion.

The treatment was successful and after about a month or so, Meredith had made a full recovery.

"The neurologist told us that 12 years ago, our daughter would have been put in a psychiatric unit and she would've died there... because they didn't know as recently as 12 years ago, what was happening or how to stop it," Christina Beck said.

According to the National Institutes of Health, autoimmune encephalitis refers to a group of conditions that occur when the body's own immune system starts to attack healthy brain cells.

This can lead to a range of symptoms, including impaired memory and cognitive abilities, seizures, balance problems, speech problems, vision problems, psychosis, aggression, euphoria, fear, panic attacks, compulsive behaviors, loss of consciousness and coma.


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