I just want to welcome every one to my blog. I’m so glad you’ve found us! I hope that this recount of Maddilyn’s treatment, recovery, and my perspective along her side, will be helpful to one of you in gaining an understanding of NMDAR Encephalitis, get a diagnosis, or just feel some place you belong….

I’ve been working on a really great post that I hope to have finished in the next few days, but in the meantime, I want to take a second to update you on Maddilyn’s second round of Rituximab that she finished this past Wednesday. We signed in on Monday morning to receive her second infusion…

I can’t believe it’s been 4 weeks since Maddi’s official diagnosis of NMDAR Autoimmune Encephalitis. When we first started this journey for a diagnosis about 8 weeks ago, Maddi’s starting NMDAR AB Serum titers were 1:5120. Now remember, normal is 1:10. Hers were the highest our particular hospital had ever seen, and is the reason…

Hope. A four letter word, heavy with so much expectation. The dictionary defines hope as: “a feeling of expectation and desire for a certain thing to happen.” “to want something to happen or to be the case.” I had always hoped that my children would be safe and healthy. I had always hoped that we…

Every day, it seemed as if a small piece of Maddi was returning to us. Every day she laughs a little more. Dances a little more. Eats a little more. It was easy to settle into feeling like she was making a full recovery, and that we wouldn’t need to do anything further. Then she…

We met with Neurology today. I was prepared to be an aggressive advocate for Maddi. I was worried that they would see all her wonderful progress, and dismiss the regressive behavior we had been seeing for the last couple of days. The regressive behavior was the most concerning to me. In everything I’ve read, all…