Living with AE

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…

Update

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….

The ups and downs of parenting a chronically ill child…

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…

Q&A- June 26th, 2016

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….

Rituximab- Round Two

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…

4 week post diagnosis update

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…

Rituximab Treatment

We checked into the hospital this morning, bright and early, to get started on our first dose of Rituximab. Even after 2 hospitalizations in the last few weeks, it’s never any easier, especially for Maddi. I couldn’t sleep last night; so full of anxiety and worry. The last two hospitalizations results in respiratory failure, intubation,…

Hope

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…

What a sneaky, sneaky, disease…

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…

The Game Plan

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…

Our first week home

I’m not going to lie. I really debated staying in the hospital. Staying in the hospital was easier. It was nice to step back and let the nurses deal with her aggressive behavior. The hospital was a controlled setting. Very little stimulus, which meant, very little for Maddi to be agitated by. Maddi’s behavior up…

Little bursts of sunshine

We’ve gotten lots of mixed responses when we ask: how long till she’s better? what’s the game plan? when do we look for? The sad part is, there is no answer. The doctors have no real data. They can give me estimates. The average person recovers from NMDA Encephalitis somewhere around 14 months. 14 months…. When I…