We sometimes hear from patients and family members around the world. We are pleased to share this wonderful story of struggle and recovery written by a young girl’s father about their family’s experience with anti-NMDA receptor encephalitis. This disease strikes all ages of people in all countries. We share this story in the desire to give others hope in the midst of extreme difficulty.
I am Ravi, father of a beautiful, cheerful, cute and lovely daughter aged about 3 years. Today I would like to share her story of autoimmune encephalitis. She was around 2 years old when this terrible disease struck her one night all of a sudden. She was completely normal, played in her playhouse and ate her dinner that day. She was an active, fun-loving and naughty child who loved her toys, parents and her Maggi. While she was playing and having pizza with me, she vomited twice and went into an inactive mode. She was not responding to anything, just looking at one side of the room. We were startled to see our child in this state and rushed her to the hospital. To our dismay, her saturation had dropped to 60%, blood pressure was 210/100 and she had a seizure. We were shattered, knowing that our beloved daughter had convulsions. At that time, we had no clue that she would be sick for a year.
She had three lumbar puncture tests and the result was anti-NMDA receptor encephalitis. This is a new and unknown disease to most of the doctors in the neurology medicine world near us. We did all types of online research which showed that it takes months to years to recover. We couldn’t believe this had happened to our daughter. She wasn’t destined to become the child we thought she would. She lost her cognitive skills, speaking, playing, walking, eating and everything which a child does. She had the Ryle’s tube inserted in her nose through which she was given milk and medicines. She had uncontrolled abnormal movements in her face, hands and legs. She had convulsions many times during her treatment which even worsened her health. We thought, “we have lost our child.” We had no clue what God had in store for our daughter.
Our brave daughter fought through the disease for 6 long dreadful months where she was given 2 doses of corticosteroids, 2 doses of IVIG, 4 doses of rituximab, 6 doses of cyclophosphamide, with unlimited pain and hardships. After these treatments, her first step to improvement was removal of her Ryle’s tube and stopping of the continuous drooling. Very slowly and steadily she responded to the medicines, and now after completion of around 10 months of fighting with this disease, she is almost back to being our normal, fun-loving, happy, playing girl which we missed. In short, our experience is that our daughter went back to her neonatal stage where she didn’t know anything. Her improvement was like a newborn child who needs to learn to walk, eat, and speak again with the passage of time.
We have been through everything in these months including tears, pain and hardships. We were just looking at her and crying until the visiting hours of the hospital were over. Our tears became part of our everyday life.
We would like to give a special mention to the Angel sent by God for our daughter in the form of a nurse. She was her best friend, took care of her like she was her mother, and did the best anyone could ever think of doing for someone. She was the main cause and reason, after medicines, for the improvement of our daughter. We sincerely pray to God to never ever give this disease to anyone anywhere in this World.
“There is nothing more painful and disheartening than seeing your piece of heart breaks in a way where it doesn’t know where it belonged.”
Many thanks to Ravi for sharing this touching story.