Ana was a happy 10-year-old just finishing the 4th grade when she came down with flu-like symptoms (writes her Mom, Terri).
By mid-week, she had started losing motor skills, couldn’t eat, couldn’t write in school, couldn’t wash her hair, and all she said was that she couldn’t focus. We didn’t know what that meant.
We took her to the urgent care center where she couldn’t pass a basic neurological exam. They suggested that she was fatigued or being bullied at school. She had been making strange chewing movements with her mouth.
I vividly remember taking her home and offering jokingly to ‘feed her like a baby’, and was surprised when she agreed. I told her to open her mouth and she lifted her arm. When I said “Come on honey, don’t mess around, open your mouth”, she screamed “I am!” and started crying. I didn’t know what to think. She was frustrated.
I remember getting her ready for bed that night when she started laughing uncontrollably and talking to herself about nothing. I wasn’t quite sure why, but now I know. By the next morning, she was hallucinating and things went downhill from there very quickly.
We took her to the emergency room. It was June 1, 2017. We spent the day in the ER getting tests, all negative of course. At one point, while she was waiting with a full bladder for an ultrasound she got very upset and jumped on the bed screaming at all the nurses and doctors that we were trying to kill her. They had to call security and psych … on our 10 year old. We had never seen her act like this. We had no answers.
It took a week for us to get the confirmation of Ana’s illness, anti-NMDA receptor auto-immune encephalitis. As more and more tests came back negative throughout the week, doctors suspected that the test for anti-NMDA receptor auto-immune encephalitis would come back positive. It did.
They started early treatment with intravenous immunoglobulin (IVIG) and steroids, and then they administered four rounds of Rituximab. Ana spiraled downwards quickly. By the second day in the hospital, she had lost her ability to walk and started on what would be a month of debilitating body spasms requiring her to be restrained for her own safety. She had many, many episodes a day where her heart rate would spike into the 180s and even 200s for long periods of time. She was in five-point restraints for weeks and didn’t sleep for 21 days. She couldn’t speak, she couldn’t eat. She experienced autonomic dysfunction. Then she went from not sleeping at all into a catatonic state holding the same position for long periods of time and then sleeping for days, barely able to open her eyes.
Finally, as her treatment with IVIG, steroids and Rituximab started yielding results, Ana started working on speech, physical and occupational therapy sessions daily. She had great therapists who helped her rebuild the basic functions needed to go home.
Ana went home after 43 days in the hospital, and then spent several months in speech, occupational and physical therapy after that. She continued on IVIG treatments monthly for six months, high-dose steroids for six months and continues with rounds of Rituximab treatment when her cell counts go up, to prevent relapse.
She went to 5th grade, and while she was fatigued every day and had challenges with homework, she made it through the school year. It wasn’t easy, but she is strong. Steroids were rough! Her personality changed. Her body changed. She had to learn how to control the emotions and frustration brought on from the effects of her disease: longer processing speed, difficulty focusing, fatigue.
We under-estimated the impact of an acquired brain injury. Ana was lucky. Some people suffer for months getting a diagnosis, but our ER doctor knew about anti-NMDA receptor auto-immune encephalitis and thought that, while very rare, we should test for it because the symptoms sounded familiar.
She ordered the ultrasound to search for a tumor, and when the ultrasound yielded no tumor, she ordered a lumbar puncture to be sure.
Ana is on a good path to 100% recovery. She just had a one-year MRI and things look normal. She is doing many of the things she missed out on last summer and is getting ready for a new adventure in middle school. Ana would not have survived without the fantastic medical team at children’s hospital. Our family would not have survived without faith, family, friends, neighbors, school community, colleagues and employers. Encephalitis International has helped us learn about the illness, raise awareness and hear survivor and family stories, so as to not be so alone in this battle. I hope one day Ana will share her own story
