Rama’s Story – Part 2

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 2 of 3 of Rama’s story. If you missed part 1, please visit Rama’s Story Part 1 or scroll to last week’s blog post.

Sept. 27, 2015
We and the doctors have decided to go ahead with plasmapheresis. This is a procedure in which 2 central lines will be placed in Rama’s arms and during the treatment, one arm will be having blood taken, then his plasma will be separated out and then new plasma (Albumin) will be put in the other arm. He will have 5 treatments total and each one lasts about three hours. The idea is that this will clear out the antibodies that are attacking his brain and replace them with donor antibodies, thus helping him. Because autoimmune encephalitis is pretty rare, they can’t give us a guarantee it will work and Rama may need long term immunosuppressive therapy. However, kids who get IV Steroids, IV Ig, and plasmapheresis tend to have better outcomes. The main risk is that Rama needs to sit relatively still during the time the catheters are in his arms. The machine will be in his hospital room so we will set him up with video games, movies, etc. He can move his arms enough to eat so that might help too.

Oct. 1, 2015
Rama had another round of IV Steroids for five days. He experienced side-effects during the process and it was a long week. However, I think the overall effect was positive and we have seen a small but significant turnaround. He is a little bit more himself, more engaged, and this progress has continued now for about 9 days which is encouraging (although we can still expect him to have good and bad days). He is on his third day of plasmapheresis and tolerates the treatments well. One of our dear friends was generous to give Rama his very own iPad mini that he uses during the treatments and that has helped distract him. The plasmapheresis doctors seem to think we should see improvement quickly but the neurologists, I think, are saying it may take longer.  We are preparing ourselves for the possibility of a more long term autoimmune therapy drug. While this is obviously not our preference, it could be a part of Rama’s recovery. In the meantime, your prayers, love, and light are a very real and powerful force in Rama’s journey and I am deeply grateful for the community that our family has.

Oct. 8, 2015
Rama finished three plasmapheresis treatments. We noticed subtle changes for the better (e.g. more focused, better emotional regulation and less triggered, able to read a little, and sit for aloud reading). Plasmapheresis is a relative short-acting treatment in which the effects last for days to weeks. The next level of treatment is a drug called Retuximab. This is an immune suppressive drug used in certain cancers; especially lymphoma. It targets the B cell antibodies. This is obviously a more serious drug with real side-effects. It is also the best line of treatment for autoimmune encephalitis (one study of 144 children had an 87% response rate). Allopathic medicine is always a risk/benefit ratio equation; weighing the real and known side-effects with the benefits – a difficult choice. After talking to the neurologist and to my mentor Naturopathic Doctor & friend, we again decided to move forward with this treatment.

Rama received his first infusion yesterday. It took eight hours and they monitored him very closely. A third of people have a small allergic reaction and Rama did have a rash, itching, and hot feeling. He was given Benadryl and Aderax (yet more drugs) and it went away and he generally tolerated the treatment well. He will have a total of four infusions over the next three weeks. Then, his next treatment will be again in 6 months. He will be on the Retuximab probably a total of two years. It may take 4-6 weeks to see improvement in Rama’s symptoms and even six months total to see the full effect. Rama will be more susceptible to catching colds etc. so we will be watching him carefully and be taking necessary steps to prevent him and our whole family from getting sick.

On a more upbeat note, Rama is improving! While he is not symptom free, the intensity of his symptoms is lessening.  We are starting the conversation about going home. This sounds great as I miss our family time. But, I also know that we have had a lot of support at the hospital and it could be a slippery road when we get home. Rama has had mental health counselors with him 24/7 since being in the hospital. They have been amazing and Rama feels really comfortable with them. One step before leaving the hospital is to ween him off these counselors starting at night. We will also do a few outings outside the hospital with the day-time mental health counselor and see how Rama does in public. Then, we will look into resources for help at home. Our sitter, Jack, who has helped us with the boys for over a year now, and who happens to have a Master’s Degree in therapy and works at the mental health center of Denver, is going to be a great help with our transition. Rama eventually will go back to school, perhaps just an hour a day in the beginning as we see what his “new normal” will be.

Oct. 13, 2015
Tomorrow is our second infusion of Retuximab. It is an eight-hour process and will be done in Rama’s hospital room. He will need two more and then will use an outpatient infusion center connected with Children’s Hospital. We had a large care conference this past Friday with all of Rama’s doctors and different therapist to discuss next steps and prepare Rama for going home. We have gradually reduced the mental health counselors that stayed with Rama 24/7these past two months.  Over the last five days, we first got rid of the night time counselors as Rama has been sleeping fine. Over the last three days we have now weaned him off the day-time counselors and today was our first day and night alone with Rama. These mental health counselors have been amazing and have contributed to Rama’s well-being physically, emotionally, and spiritually. We all have become friends over the last 2 months and Rama has come to trust them deeply. They will be missed and we hope to keep in touch. Rama is scheduled to go home this Friday. Thursday, we are catering a little lunch for all the people that helped with Rama’s care. The hospital is providing a cake! Then, Friday we will check out, stop at the pharmacy, and say our goodbyes.

Rama is excited to go home and looking forward to his own bed, his gecko “Shadow” and finding his rhythm. He gets easily overwhelmed so we hope to create a safe space for him in the house where he can go to relax.  For me, I am a little nervous as I know there will be some hard days and a new normal as our family begins this new phase of recovery. We will be having a therapist coming to our home to work with Rama on managing his behavior and emotions. We will also do outpatient art therapy as well as psychiatry visits (and the infusions). Our school has been amazing and we are in the process of setting up support and services for Rama’s education. He won’t go to school full-time right away but will slowly integrate as he is able. Our healing ceremony our friend Derik organized last Saturday was very powerful as we chanted the mahamrityunjaya mantra (healing mantra) 108 times for Rama’s healing, and healing in general for all of us and the world. We have had many people praying for Rama from many different religions and it feels wonderful.

Rama’s story continues next week
Please come back next Tuesday, January 19, as we continue with part 3 of this 3 three part story.  We will hear about Rama’s return home.

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.