Anti-NMDA Encephalitis Lived Experience – Maddi’s Story

Before November 2015, my daughter Maddilyn was a ‘typical’ 5 year old (writes mum, Tricia).

She was silly, loud, full of energy, and bit sassy. She had always been a kind and affectionate child. She was helpful and mindful of others, until one day, she wasn’t.

Suddenly, Maddilyn became sarcastic, aggressive and combative. Everyday things became a struggle. Our bright, silly, carefree dreamer had morphed overnight into an angry, moody, sad child. Her father and I attributed her change in behavior to the stressors in life (starting school, family illness, addition of a new sibling), but when the behavioral interventions we normally used stopped working, and her behavior escalated into violence, while at the same time she was refusing to eat or sleep, we knew something more was wrong.

On 17th May 2016 after months of aggressive behaviors, refusing to eat, nights of endless sleep, and no answers, she suffered a grand mal seizure and was given the diagnosis of anti-NMDA receptor antibody encephalitis.

What is NMDA receptor encephalitis?

A quick search of the internet left me feeling overwhelmed. I learned that it is treatable, and outcomes are good with early diagnosis. It was unclear at what point in the disease Maddilyn was, but her titers were excessively high, at 1:5120 (normal 1:10). She was immediately started on intravenous steroids and intravenous immunoglobulin, and within hours, she was awake, smiling, and asking for food for the first time in two weeks.

Maddilyn has been battling this disease for the last eight months. She has had multiple drugs and therapies. She is better in many ways, but at the same time, not better at all. Since her diagnosis, Maddilyn has struggled with a variety of symptoms (headaches, fatigue, nausea, random pain and blurred vision), she struggles to formulate thoughts and remember things, she struggles with focusing her attention and controlling impulsivity. She has mood swings, is often anxious, and is easily overwhelmed by stimulus.

Our life as a family has changed drastically. Maddilyn has a central line that requires daily care.

She is no longer able to shower herself and requires help. She has weekly infusion appointments that sometimes take the whole day. She’s hospitalized every other week for treatment. Medications changed her physical body. She has lost the innocence of childhood, because she has seen and been through far more than any child should. As her parents, we have lost the blind ignorance that allowed us to sleep at night. We live on the edge of anxiety and analyze every behavior for signs of relapse.

Disease awareness has been a huge part of Maddilyn’s treatment and our healing.

I started a blog to journal Maddilyn’s story, and spread awareness of NMDA encephalitis, with the hope that it would support others, or help someone reach a diagnosis. I am actively part of support groups on Facebook, which allow me to connect with others managing this disease. My hope has always been that Maddilyn’s story would help another child get an early diagnosis, and in that, all of her suffering would have not been for nothing.

Tricia’s blog can be found at www.maddibeatsae.wordpress.com

More information about Anti-NMDA encephalitis can be found here.