Bang! The noise coming from the second floor of her home sent Omaira quickly upstairs. She found that her daughter, Iris, had walked into a wall. Iris seemed fine physically, but she was confused and unaware of her surroundings. As a precaution, she took her daughter to the closest emergency department. They tested Iris for COVID-19 as she was displaying many symptoms of the virus, including fever and nausea. Returning home, they isolated Iris in her room while they waited on test results.
The next day, everything changed. This time, there was another noise from upstairs, but much louder. Omaira felt complete dread as she raced upstairs. She screamed for Iris as she went to her room and found her laying on the floor; her hands crooked as her body experienced tremors. Iris was having a seizure. Omaira felt terrified and utterly helpless as she watched her daughter’s eyes roll backward. Iris was gasping for breath and her lips began to turn blue. Omaira prayed as she called 911.
Upon arrival, the first responders evaluated Iris and decided she needed to be seen at Orlando Health Arnold Palmer. Iris spent the next three days in our hospital undergoing tests, but despite this, nothing revealed a definitive diagnosis. Iris was recovering and had no further episodes. Consequently, Iris was discharged for care at home with education, preparation and directions to return if another episode should happen. Only one day after returning home, things Iris was saying didn’t seem to add up, her behavior was odd and her emotions were erratic. Iris began to share that she felt like her brain was “frozen on ice”.
Returning to the hospital and receiving additional tests at the Epilepsy Monitoring Unit, her neurologist, Dr. Bello-Espinosa, noticed something that redirected the medical team’s initial thoughts. He asked Omaira if she had ever seen the movie “Brain on Fire”, the film based on a true story of a young woman with a mysterious illness that later turns out to be a rare autoimmune disease attacking her brain. This is what Dr. Bello-Espinosa believed Iris was suffering from. He went on to explain that the first incident was most likely what is known as an “awareness seizure”, which means the person is alert, but is having a seizure within a small portion of their brain. The following day, this progressed to a full-blown seizure.
With this new direction, and further diagnostic testing, her neurologist was able to confirm Iris had Anti-N-methyl-D-aspartate (NMDA) receptor encephalitis, an autoimmune condition in which the body produces antibodies that act against receptors in the brain, resulting in both neurologic and psychiatric symptoms.
Today, Omaira credits Dr. Bello-Espinosa and the Orlando Health Arnold Palmer team with saving Iris’ life. Iris receives monthly Intravenous Immunoglobulin Therapy (IVIg infusions) in follow-up care. Omaira and Iris are grateful to share their story and hopefully help more families in similar situations.