“On December 21, 2015, Nina had a 45 minute seizure.” That’s how Nina’s story starts. It is an all too familiar one for many parents. The good news is that rapid diagnosis and treatment allowed Nina to come home after nearly 3 months in the hospital. She was able to graduate from kindergarten this spring. To view a video that Nina’s mother created please click here, or continue reading below.
Nina’s story continued…
We immediately took her to the ER and from there she was admitted to the ICU. For about 2 weeks doctors couldn’t figure out what was wrong with her nor could they keep her seizures under control. Her health quickly began to deteriorate. She stopped talking and was too weak to walk. She began to have violent psychosis episodes where she would arch her back, bite herself and even tried to jump out of bed. Finally, her spinal tap test results came and it was determined that she had NMDA.
The doctors immediately began her treatment: IVIg for 5 days, plasmapheresis transfer treatment 4 times and lastly 4 rituximab treatments. It seemed that the rituximab is what brought my baby back to us. She was in the ICU for a total of 2 months and 2 days. From there she got transferred to a rehab hospital. She recovered so quickly there, and finally was discharged March 25. Since she’s been home she’s been doing so well. Her memory is great, her speech is improving, and she even graduated kindergarten.
More from Nina’s mother, Tania
I wrote about Nina experience and created the video because I just want to give hope to whomever reads and sees the video about her. I know everyone’s case is different but just know that you or your loved one can overcome this horrendous disease. There were nights where I stood crying and praying for my baby to get through this. I would beg God to please heal her. And he answered my prayers. In the back of my mind the fear of this coming back still lingers…and that is one of the hardest parts about autoimmune encephalitis…but I can’t let that fear take over. I’ve learned to cherish every moment I can with my kids because we never know what the future holds.
AEA is grateful for Tania for sharing her story with us. If you would like to contact her please email firstname.lastname@example.org