Victoria’s daughter, Age 2-1/2, Tasmania, Australia
On 19 December 2018 my then two and a half year old daughter had a wee fall/trip in our backyard. No crying came from her so we thought all was good till the same day, hours later we noticed she had a limp on her right side and her right hand was sagging down. By that night, around seven o’clock, I took her to the local hospital and got her checked hoping she hadn’t sprained or fractured anything. The doctor and nurse found nothing wrong so told us to come back in 48 hours if it got worse. By the next day it had got quite bad to the point she was crashing and bumping into everything, slurring words and when she would look at you it was like she was looking straight through you, so my partner said we should take her to a bigger hospital an hour away to get her checked out. When we arrived, they did an assessment on her and took her for a CT scan which came back negative. We got admitted on the 22nd of December and by the 23rd she was worse. She couldn’t talk properly, was barely able to walk on her own and couldn’t hold her bowels (by then we had her day toilet trained) so they decided to do a MRI on her but the hospital they had us in didn’t do MRIs under general anesthetic, so on the 24th of December we were then flown to a hospital 5 hours from our home.
By Christmas morning she had got worse. Screaming matches, uncontrollable movements in general our two-year-old looked possessed. they ordered an MRI and lumber puncture that week which came back clear, but they found something in her spinal fluid. They ordered another MRI, full blood count and lumber puncture as there wasn’t enough fluid in the first one to get a clear answer. By week two we got our answer. She was diagnosed with anti-NMDA receptor encephalitis. I had no idea what it was they had told us she had, so that was me straight onto google thinking the ultimate worse. Anti-NMDA receptor encephalitis is a neurologic disease first identified by Dr. Josep Dalmau and colleagues at the University of Pennsylvania in 2007. It is an autoimmune disease, where the body creates antibodies against the NMDA receptors in the brain. These antibodies disrupt normal brain signaling and cause brain swelling, or encephalitis. It can affect both men and women, however, it is more common among women. It primarily affects the young, including children and young adults.
Some patients also have a tumor associated with this disease; the most common type is an ovarian teratoma in women. The name of this disease describes an immune attack on the NMDA receptors. My healthy, bubbly, outgoing two-and-a-half-year-old beautiful girl got this. By the time the first month was up my baby couldn’t walk, talk, eat or control any part of her body. My healthy girl went in at 13.7kgs and by the time 1-2 months come along she went to her worst at just above 10kgs. My little girl that used to run around after her dad is now immobile and learning to walk again. My little girl who used to eat anything and everything is now eating through a tube in her tummy. My little girl who used to talk and sing her little heart out can only communicate by either trying to grab things, using her eyes or mumbling. The amount of medication that goes through her system is beyond me. the treatments she’s been through, IVIG, Steriods, Plasma Exchange, Rituximab and others is mind blowing. How did she get this? It is still beyond us. The usual symptoms that lead up to this disease are viruses, cold/flu, seizures, teratomas, etc but she had none of them. She wasn’t sick, she had no seizures, no teratomas or viruses prior to getting it. In other words, my baby just happened to wake up one morning and her body had the audacity to do this to her. I still didn’t really understand it much compared to her father until he told me there was a movie on Netflix called ‘Brain on Fire’. After watching it, it kind of opened my eyes up a bit more to what she was going through. We spent four and a half months in hospital. After her trip to Melbourne Royal children’s hospital she was allowed to come home for a month’s trial basis to see how she copes. By then I had given birth to her little brother. My mum and sister were with us the whole time helping and when we had to go back to hospital my beautiful mama stayed with her while I stayed at the Ronald McDonald house with Nathaniel. She spent 3 more weeks at hospital before we were allowed to come home permanently.
We are now going on the 9th month with this and she has improved so much. Our beautiful, bubbly girl is showing herself again. She’s laughing, smiling, being cheeky as usual and also got a bit of sass back in her. She has improved so much in her standing, walking with AFO’s and leg splints with the help of someone holding her. She is sitting on her own with a bit of help here and there and every now and then you will hear a ‘mum’ or ‘daddy’ come out of her mouth. We still have a long road ahead of us but with positive feelings around her and the constant rehab sessions and team she has working with her, my baby girl will hopefully go back to her normal self and show us she can kick this stupid shit in the butt.