I realized it had been over a year since I had updated our blog. We started documenting Maddi’s journey on this blog in early 2016. We have since moved to Facebook and maintain an active presence there.   Please check out our page here: https://www.facebook.com/maddibeatsae

To my sweet baby girl, Maddilyn: It’s hard to believe that it was almost two years ago that we started on this whole journey. I look back on it now, and it doesn’t seem real. I sometimes get these moments when things are quiet, or when I’m watching you work on school work, dance, or…

This time last year, I was very ready to kick 2016 to the curb. It had been a year of heartache, stress, and constant worry. Going into 2017 seemed promising for Maddi’s wellness. She had been doing very well for several months on a combination of Plasmapheresis, Rituximab, & oral steroids. As 2016 closed, she…

We are crazy prepping for Hurricane Irma here in Florida. Having a child with a chronic medical condition has me extra anxious, so we are staying put & hunkering down, so we can be close to our hospital (just in case!) Maddi has been battling an abscessed tooth for the last several weeks that just…

In late 2016, when Maddi developed a central line infection, it was discovered that her IgG levels were bottoming out each week following plasmapheresis. Her health was at a very crucial point, and she was dangerously close to a scary place where even a small infection could mean live or death. It was then our…

I’ve been working on a mental health series for the International Autoimmune Encephalitis Society to talk about the connection between Autoimmune Encephalitis and Mental health. June’s topic was talking about Depression, in relation to Autoimmune Encephalitis. Read more about Autoimmune Depression here: https://www.autoimmuneencephalitis.net/single-post/2017/06/20/Fighting-the-Madness-Autoimmune-Depression

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,…

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…

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…

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…

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…