#FighttheMadness 2018 edition

January has been such a crazy month! I’m thankful to each and every one of you who reach out with words of encouragement and prayers for Maddi and our family. I can promise you, they are felt! I wanted to take a second and give an update on Maddi’s health and some things that will…

2017: A year in review

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…

Sometimes it’s bad, but then sometimes it’s good, too.

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…

The use of Bortezomib in Autoimmune Encephalitis

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…

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…