Mum, Laia, shares her story of son, Pol, and his diagnosis of autoimmune encephalitis associated with anti-MOG receptor antibodies.

It started on a Sunday, during a family lunch, when Pol our active, healthy 7-year-old developed a high fever. At first, we thought it was just a virus. But within days, his behavior became alarming – extreme lethargy, emotional outbursts, and sensory issues especially with his back. Then came the insomnia, strange gazes, mumbling, and isolation. As a mental health professional, I knew something was very wrong.

After a week of worsening symptoms and a seizure, we rushed him to a paediatric hospital in Barcelona. There, following many tests and difficult nights in ICU, Pol was diagnosed with autoimmune encephalitis with anti-MOG receptor antibodies with FLAMES. His immune system had attacked his brain following a virus. He had dozens of seizures, extreme sensitivity, and needed continuous IV treatment.

Pol recovered quickly and was discharged after two weeks, but the aftermath was overwhelming. He became aggressive, emotionally unstable, and deeply anxious. Social life became nearly impossible, and even simple family outings were derailed by his outbursts. As parents, we felt guilt and confusion we knew this wasn’t ‘just behaviour’ – it was his brain healing in unpredictable ways.

His siblings were also deeply affected each showing signs of stress and anxiety, eventually needing therapy. Pol, too, began weekly psychological support and underwent several rounds of Rituximab. By December 2024, neuropsychology confirmed he was now functioning like a child with ADHD. He began medication, including methylphenidate in early 2025, which brought great improvements in focus, relationships, and self-esteem.

Yet the road is not linear. In January 2025, Pol was hospitalized again for a major seizure. Since March, he has had seizures during sleep, requiring new medication. Our journey continues with therapy (including horse therapy), medical support, and a lot of love.

To those living through encephalitis whether as a parent, caregiver, or patient know that you’re not alone. The illness doesn’t just affect the brain; it touches every part of life. There are hard days, but also hopeful ones. Our family keeps showing up tired but determined learning to sail through the storms together.

Story published August 2025

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