Maddi’s Immunologist ran the Anti-NMDA antibody titers on Tuesday during our Rituximab infusion, and I got the results this morning! A reminder, at diagnosis, her titers were 1:5120; normal values are 1:10. Her doctors stated that this was the highest titer value they had ever seen, which led them to believe that she 1) had a…

Maddi was discharged last night after a 14 day stay. She had lots of procedures, and hopefully this new treatment plan will be what helps her stay well. Here is the transcript of updates over the last 14 days:   Day One (8/29): Maddi was admitted to SC Hospital this morning. We have a long stay…

I’m sitting here, sipping coffee, watching a waiting room full of people anxiously awaiting news about their loved ones who are upstairs in the operating room. A year ago, I wouldn’t have had the faintest idea of what that feels like. Everyone in my family has always been relatively healthy. Those circumstances always made me…

We met with Maddi’s Neurology Team last Tuesday to talk about her progress so far, Jason and I expressed our concerns that Maddilyn had seemed to be getting no better since her last round of IVIG and Steroids. For the last 4 weeks she had been consistently irritable, aggressive both verbally and physically, and starting to…

It’s been three months since Maddilyn was diagnosed with NMDA Encephalitis. The initial critical parts of her illness are over, and now we are learning how to settle into the flow of managing a chronic condition. It’s tough; most days. She is getting better every day. In large, she’s regain almost all normal functioning. She struggles…

It’s been three months since Maddilyn’s diagnosis. Three months since we rushed her into the emergency room, catatonic; scared, and not really sure what was going on. It’s been three months filled with doctor’s appointments, medications, needle pokes, hospital stays, exhaustion, frustration, sadness, and joy. Three months since our lives were turned upside down. I…

I’m working on getting an update posted in the next couple of days. A lot has gone on in the last couple weeks.  For now, I want to post this picture to show how far Maddilyn has come in the last three months. In the first picture, it was the day of her VPK graduation….

Its been a few weeks since my last post/update. After Maddi’s last Rituximab infusion, things were looking really positive. She seemed to be doing so much better. She was happy, skipping, full of energy. We discontinued the Risperdal about two weeks ago, yesterday. She had been down to one dose for about two weeks, and…

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…