In early 2016, our family was turned upside down when our daughter began to exhibt a series of dramatic and violent personality and behavioral changes, that quickly escalated into Neurological and Cognitive dysfunctions which ended with an induced coma. On May 17th, 2016, Maddilyn, or Maddi as she prefers, was diagnosed with Autoimmune Encephalitis- NMDA Receptor Type. At that time neither my husband, myself, our family, or friends had any idea or understanding of this diagnosis. This is my recount of our journey from the moment of diagnosis, the months leading up, her aggressive treatment, and recovery over the last 10 months.
My goal in sharing Maddi’s story has always been to spread awareness for Autoimmune Encephalitis. Autoimmune Encephalitis or AE for short is a rare disease, with only 900+cases diagnosed since 2007. AE is rare, but only because there is a lack of awareness. My hope is that somewhere out there, someone will read her journey, and through it, find a diagnosis themselves. I aim to share my personal experiences of this journey, as her Mother, in a hope to reach out and connect to parents who are struggling with the emotions, pain, trauma, and stress of caring for a child with Autoimmune Encephalitis (AE).
If you have any questions, please do not hesitate to contact me via this blog or email me directly at firstname.lastname@example.org
4 Comments Add yours
Hi my daughter also had auto immune encephalitis & still recovering. Can I ask what treatment she received after as a follow up?
Yes Patti! She just received her first dose of Rituximab. We’ll return in two weeks for a second dose, along with a second round of IVIG. In 12 weeks, we’ll receive a 3rd round of Rituximab. I believe the gameplan is to do a repeat MRI to check for a teratoma and plasmapheresis at that point if she has not made enough progress. I hope your daughter is doing well!
We are starting Rituximab Wednesday for AE. I hope your daughter is doing well and didn’t have any side effects. How is she doing? Did you see any changes after the 1st round? I understand it can take 2 months to see anything.
After the first round of Rituximab, I noticed that she was more like herself. We have been lucky that there have been no side effects thus far! She is doing very well so far! Please look for an update very soon!