- Lili Manzo was suddenly paralyzed when she was 13 years old.
- Doctors initially diagnosed her with anxiety, but she had a rare form of brain swelling.
- “My emotions are like waves” she told NJ.com.
Lili Manzo was 13 years old when her entire body relaxed for the first time. The New Jersey teenager was healthy before nausea overcame her on the afternoon of March 30, 2022, according to nj.com. Sitting in her mother’s car, Manzo became pale and silent, unable to speak or wipe the tears from her face.
“It’s like I was there, but I couldn’t do anything about it,” Manzo, now 14, he told the local news outlet.
Manzo had a seizure in the ambulance at the hospital that day. Looking back, she said that she felt like she was trapped in a “lucid dream” or virtual reality game as she lay practically paralyzed, only able to shake her head, yes and no.
For most of the next week, Manzo lay in a hospital bed as doctors tried to figure out what was wrong with him, according to nj.com.
She was released from Morristown Medical Center after a seven-day stay, during which time she regained the ability to use her hands, legs, and voice. However, she was sent home without a diagnosis.
It would take another month for Manzo to be accurately diagnosed with seronegative autoimmune limbic encephalitis, a rare condition in which the immune system attacks the brain.
Doctors initially said her symptoms were caused by anxiety and prescribed antidepressants.
During his first hospital stay, Manzo’s doctors performed multiple tests to check for brain abnormalities. An MRI and an electroencephalogram (EEG) came back clean: there was no brain tumor and his brain activity seemed normal. But the teen’s braces were also obstructing a crucial part of the images, according to her mother, which doctors ignored.
According to NJ.com, Manzo’s doctor at Morristown Medical said his illness was “all in his mind.” He prescribed antidepressants and released Manzo once he recovered his motor skills.
But back at home, the teen still had trouble walking and talking, her mother told the news outlet. On April 22, just a month after her first symptoms, she suffered her second seizure.
A second neurologist agreed that the cause of Manzo’s symptoms was probably anxiety and increased his dose of antidepressants. The neurologist also recommended against taking Manzo to the emergency room after her seizures. According to his parents, the doctor said that Manzo could “over-medicalize” her case in a hospital.
But Manzo’s medical crisis was not imagined. When she had a third seizure a week later, her parents took her to the emergency room at Saint Clare’s Hospital Denville in Morris County, New Jersey.
Manzo’s immune system was attacking his brain
Dr. Jeffrey Kornitzer, a pediatric neurologist, finally took Manzo’s condition seriously. After a spinal tap, he diagnosed Manzo with seronegative autoimmune limbic encephalitis, a rare type of brain inflammation caused by the immune system attacking his brain.
Manzo’s condition is rare: About one in 100,000 people are diagnosed annually with autoimmune encephalitis, according to Children’s Hospital of Philadelphia. About 40% of those cases affect children under 18 years of age.
Treatment recommended by Kornitzer with intravenous Immunoglobulin Therapy, what has started Manzo on the road to recovery. But she’s not completely healed yet.
“Sometimes I’m really tired,” Manzo told NJ.com, “and no matter how much sleep I get, I’m still tired. And sometimes emotionally I’m not there. Like I have random outbursts of anger and sadness. My emotions are like waves “.