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. 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. We continue this week with part 3 of 3 of Rama’s story. If you missed the previous entries visit Part 1 or Part 2 respectively. We hope you have enjoyed getting to know Rama as much as we have.
Oct. 26, 2015
Our first week home from the hospital we had three different doctor’s appointments. We had to go back to Children’s Hospital twice for outpatient appointments and another infusion. A psychotherapist is coming to our home two days a week to work with Rama as well. Rama did manage to see some of his buddies last weekend and made some short appearances at school this week. He misses his friends and his school a lot. We are going very slowly and want him to feel safe and ready before he starts school full-time. Our whole family has been affected by this experience. I know personally that I feel traumatized by Rama’s illness. Rama’s brother is getting his own support and we will go through therapy separately, and together as a family.
Rama has been home about 10 days now and although he isn’t 100%, he certainly isn’t worse. We created a safe space for Rama where he has pillows, prayer shawls and lots of stuffed animals. He knows he can go there if he feels overwhelmed or tired. Per Rama’s request, we are building a dome in our back yard so Rama will have a place outside to call his own as well. It’s great to see them both out in the back yard with all their building materials and power tools. Physically, Rama tires easily and frequently feels like he needs to rest. I imagine the Retuximab infusions that are suppressing his immune system weaken him a little but I think the whole trauma of his experience has left him in survival mode. He is still experiencing some neurological tics. Mentally, he still has a lot of intrusive thoughts and is very sensitive to noise, light, and over stimulation. His attention span is pretty limited right now but we are doing read aloud books. We are in the process of seeking out a well-known occupational therapist who works with children who have gone through trauma and have sensory issues and are not able to regulate their nervous system and stress response. We are also getting some therapeutic body work.
Nov. 26, 2015
Today is Thanksgiving. We have much to celebrate and be thankful for. Our “new normal” is still coming together. Our whole family dynamic has changed and Rama’s illness has put stress on all of us. Rama continues to slowly improve. He still tires easily and has difficulty regulating his emotions and behaviors to a lot of stimuli. He still has occasional neurological tics and intrusive thoughts that seem to worsen when he is tired. He is spending a little more time at school and we are doing some extra school work at home. We are still having at least 2-3 appointments per week. He is done with the Retuximab infusions for a few months but still continues to take daily medications. Now that Rama is home and out of an acute phase of his encephalitis, I can use my medicine as a naturopathic doctor to help him heal as well. We are also doing some integrative body work along with the Occupational Therapy.
Rama had been doing okay. He has sensory issues now, which means it is difficult for him to filter out all the stimuli of his environment. He is more sensitive to sound, light, touch and too much stimulation and tires easily. Rama has been doing pretty well integrating back into school and been able to hang out with a few of his friends. None of this has been easy for Rama and I am proud of how hard he works to manage himself and feel grounded. However, this past week, he experienced a small set back and is back at Children’s Hospital. They are administering more IV steroids this week in hopes that this will help him get better. The steroids have worked well in the past. All I ask of you is to just hold Rama’s image in your hearts and surround him with lots of light. He has a wonderful way of bringing people together. Despite my fears and worries, I try to have hope that Rama will eventually heal and that one day this will be behind us all.
A mother’s gratitude
In November, I found out about the Autoimmune Encephalitis Alliance, which has been a great resource for me. They help raise awareness of this rare condition and also hold an annual race to raise money for further research. They were able to raise enough money to hold an International Symposium medical conference. I have been listening to their lectures on line and am fascinated about how diverse these autoimmune conditions of the brain can be. We are hoping to go to North Carolina in March for the next annual race called “Florence Forth.” The couple who founded the alliance lost their daughter 3 years ago. I cannot imagine how hard that must have been. They have also put me in touch with another family which has been very helpful. Rama often says he wishes he could meet “kids like me.” I think going to North Carolina will allow him to see other kids and realize he is not alone.
Brenna thanks the following: all the doctors at Children’s Hospital; the mental health workers who spent so much time with Rama and were so compassionate; the school community who fed us, picked up our older son, brought groceries, stayed in touch, and are providing support and accommodations for Rama at school; our extended yoga community for their prayers, intentions and healing ceremonies; our friends at cherry creek athletic club for their support, food and groceries; my longtime friends for showing up, bringing food and showing their love; my family for their love and support; for the healers, body workers, naturopathic doctors and therapists who are helping Rama heal; and for my beloved spiritual teacher, Baba Hari Dass, for showing me the path of yoga and helping me work toward inner peace.
We hope you enjoyed getting to know Rama and Brenna and their family. We at the AE Alliance are grateful for their sharing and we wish for continued recovery and peace for their family.
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.