As we begin a new year we want to share a story with you. It is the story of a cute Colorado kid named Rama. We hope the detailed experiences of Rama and his family will offer personal insights that each of us can understand. The family moves from confusion to diagnosis to care to healing and to set-backs, all in the midst of hope. We trust through this story that both those familiar and unfamiliar with autoimmune encephalitis might better understand what happens to patients and families as they navigate the ups and downs of this disease.
As his mom, Brenna, describes him, “Rama’s best gifts have always been his sweetness and compassion to animals. He has always been a creative kid, telling stories with his Legos, doing art, and climbing trees.” In this three-part post, we hope you will enjoy getting to know Rama and his family’s story, as relayed by his mother. What follows are excerpts from Brenna’s writings on “Caring Bridge.” She was gracious enough to offer her help to AEA. This sharing of a son’s struggle with AE proves her commitment, strength, and love – a love that she extends to all those affected by AE – for AEA and raising hope. She is quick to express gratitude to the known and unknown supporters of her family and to the community that she has unexpectedly found. Here’s Rama’s story:
Rama’s Story (part 1 of 3)
Early Sept. 2015
“Mom, the class voted me the “Responsibility Rockstar!” Rama loved school and had no behavior problems or sensory issues. He has mild dyslexia which made reading a bit harder, but also makes him think in pictures and three dimensionally. He is very mature for his age and often coaches his brother to “take a deep breath. It’s going to be okay.” Rama played soccer, a little basketball and really enjoyed being on the swim team the last 2 summers. He is a little older than his classmates (he has a summer birthday, so as a boy with dyslexia he started kindergarten just after he turned 6), and is a positive classroom leader.
This all changed quickly and within a span of about 3-4 weeks his behaviors became really strange. When he very first seemed sick, it was just a lot of jumping and some spinning with counting. It seemed strange but I didn’t really recognize it as dangerous. So you can imagine my shock when he would wake up at night screaming, refused to be cuddled and began banging his head on counters and tables, hitting himself because a voice inside his head told him too. We scrambled to get him therapy and I took him to a mentor homeopathic and naturopathic doctor for help. We tried in vain to talk to him, comfort him. Finally our part-time sitter (who has a Master’s degree in therapy, and works at the mental health center of Denver) suggested we take him in for a brain scan. Even though I have a medical background, it just didn’t occur to me. We took him to the ER the next day. He needed to be restrained and sedated while they ran tests (e.g. CT, MRI, lumbar punctures, etc.). He got IVIg and IV Steroids and he improved dramatically and even went home for a few days but he got worse again, severe OCD, catatonia, high blood pressure and heart rate, abnormal EEG’s etc. After another 3 weeks in the hospital I created a “Caring Bridge” website and made the first journal entry in hopes that my writing might not only be cathartic, but I also hoped that our story might find an “a ha” diagnosis among others who recognized Rama’s symptoms.
Sept. 18, 2015
His working diagnosis is autoimmune encephalitis, in which your immune system attacks your brain. We are still working on the cause of why this happened (we may never quite be sure). However, as a result Rama is having a lot of fluctuating in mental capacities as well as sometimes severe obsessive compulsive disorder, and tic-like symptoms. He has been treated with IV steroids and IVIG to help with the overactive immune response, as well as a few other medications to help with catatonia and OCD. Now a month later, Rama is slowly doing better but we are not ready to go home. Doctors are looking into further treatments, doing a few more tests and managing him day to day. We so appreciate all the help, love and prayers you have sent to Rama and our family. Our school community, yoga friends and lifelong friends have shown us incredible support.
Sept. 22, 2015
Rama had another lumbar puncture today so they can collect more Cerebral Spinal Fluid for testing, and for freezing for potential use later. We will be talking to the neurology doctors about next lines of treatment for the encephalitis. Neither one is without side effects. Weighing the pros and cons will reveal that there is no “best” answer.
Rama’s story continues next week
Please come back next Tuesday, January 12, as we continue with part 2 of this 3 three part story. We will hear about Rama’s improvement after plasmapheresis treatments and drug therapy, and how he just wants to go back to school.
Join other AE patients and families for lunch on March 5, 2016 in Durham NC
All AE patients and families are invited to join the AE community at the Florence Forth run/walk on March 5, 2016 (Florence Forth details), and stay for the 3rd annual AE family lunch afterward ( Family Lunch details ). The lunch is sponsored by the Autoimmune Encephalitis Alliance and is free of charge for patients and families.