Florence Fourth Road Race

This past weekend, Jason, Maddi, Jaxon, & myself, made the 500 mile journey to Durham, North Carolina to participate in the 5th annual Florence Fourth Road Race. This was the first time our family had ever traveled out of state, let alone with Maddi and all of her special needs. Jason and I prepped months…

World Encephalitis Day

Shout out to all the amazing friends and family who went Red today to raise awareness for Encephalitis. Maddi’s form, Anti-NMDA Receptor Encephalitis is a rare autoimmune disease with no cure. This is a chronic life long illness that she will manage forever. The hope is her disease will stay in remission for a long,…

When is it more than just a tantrum?

All information provided is a result of my own personal and clinical experience treating children ages 0-5 with disruptive behavioral problems.  Tantrums/Behavioral Disturbances are a normal part of healthy development. I don’t want people who read about Maddi, or her journey and symptoms get unnecessairly worried that just because their child has tantrums, that they could…

New year, new treatment plan!

Happy 2017 everyone! If this is your first time reading about Maddilyn and our family’s journey with Autoimmune Encephalitis, Welcome! Please look through the archives to read about her diagnosis and treatment in the last year. Please feel free to share this blog with anyone you think may benefit. The best way to help those suffering from…

Happy Halloween!!

Every holiday, even as insignificant as Halloween, means so much more to us now. The fact that Maddi is walking, talking, laughing, and jumping is a blessing we no longer take advantage of. I’m so happy to report on her wellness. There is hope in the darkness of this disease! Maddi is doing better each…

5 months and counting…

It’s been five months to the day since Maddi was given the official NMDA Receptor Encephalitis diagnosis and treatment was started. Just 6 months ago, our lives were “normal-ish.” No weekly hospital appointments. No medication regimes. No having to wrap our kid in saran wrap for bath time. No anxiety or fear over all the…

Good News!

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…

Treatment Updates

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…

Remaining humble during the storm

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…

Month 4- A new treatment plan

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…

What happens when the smoke clears?

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…

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…