I consider April 28th, 2016 to be the “official” start of this journey, although Maddi had been sick for many months before. On April 28th, 2016, Maddi casually stepped on the scale in my bathroom as I got ready for work:
Wait? 38.5lbs, that’s not possible- I thought to myself. Just weeks previously I had done heights and weights on the kids, and Maddi was holding steady at her usual 43lbs. I got up and went to her to check and make sure the scale wasn’t malfunctioning, and sure enough, it was correct. I felt panicked, because that meant Maddi had lost almost 5lbs in a matter of weeks. I knew immediately something was wrong. Kids don’t lose weight like that; especially not that fast. I resolved that I would call the Pediatrician and make an appointment to have her looked at.
As I made my way back to getting ready, Maddi headed out to the kitchen, but she stopped in the door of my bedroom, shrieking out in terror. I ran to her, worried something had happened, but through her sobs, I realized she was terrified to walk down the hallway, as her one year old brother was standing at the other end. She was having a panic attack, and was crying hysterically. She was truly afraid, and I was afraid, because I didn’t understand what was happening. It took me nearly 45 minutes to calm her down, and during that time, I decided to call out of work and get her into our Pediatrician that day. After calming her, I brought her to the kitchen to eat breakfast, and she sat at the table and cried silently because the bread she had been eating for months had Oats on it, and she suddenly had a problem. I started thinking about all the times in the last month Maddi refused food; it was so unlike her. I worried she was mimicking habits of her older sister who is a very picky eater, and thought if I didn’t give it any attention, it would stop; but then I started thinking about all the afternoons she was coming home with a full lunchbox, barely anything touched.
I started to google her symptoms: excessively crying, irritability, aggression, poor sleeping, sudden weight loss, and unexplained anxiety, and of course clinical depression popped right up.
Could Maddi really be depressed? I mean, maybe she was processing what happened with her Grandfather just a couple months previously, later than the rest of us. Maybe she’s being bullied in school? Maybe she’s sad over having a new sibling? Worse? What if someone is hurting her. I asked in every way I could; from every angle and perspective, terrified that Maddi would reveal that she was being hurt in some way, but each time she responded no. I felt confident enough in her body language and response that it was unlikely to be abuse; so what now? Is my 5 year old clinically depressed?
I was so sad for the rest of the day. I couldn’t help but think about what a failure I was for her. I let my 5 year old get depressed. Did I not spend enough time with her? Is it because I work? Or that her big siblings don’t live with us all the time? Did Jason and I make a bad decision in having a second child? What could have happened to cause my bright and bouncing baby to feel so sad and trapped in her feelings?
We headed to see our Pediatrician, and throughout the visit, Maddi clung to me and sobbed. There was no trigger. There was nothing new about this experience. Nothing to explain why she could be crying. She just cried. Dr. Ryan agreed that this was so unlike Maddi, who is typically chatting her up a storm and bouncing on the exam table. So, we brainstormed.
Is her blood sugar bottoming out?
Are her sleep cycles dysfunctional?
We left her office with marching orders. Blood work to rule out deficiencies, an appointment for a sleep study, and a referral for therapy.
I felt some relief. Maybe we would get some answers, and then things would get better.
I hadn’t slept a full night in weeks, as Maddi had been waking up within an hour of bedtime, crying & disoriented. She would wake up in the middle of the night screaming, crying, and throwing things. She was beginning to hurt us, and herself. We were so scared.
I scoured the internet with my friends. Trying to find some explanation for what was going on; but nothing turned up. Nothing we found could explain what was going on.
It has been a long year. I’ve learned so much about Maddi, myself, and this disease. I started this blog in hopes that there would be someone out there, doing the same thing I did- scouring the internet, and they would find Maddi’s story and maybe a diagnosis.
As we enter into the month of May, I am filled with dread as Maddi has started to have relapse symptoms in the last two weeks. May 2016 will forever be the worst time period of my life, and I feel anxious for the unknown.
Anti-NMDA Receptor Encephalitis is rare, but only because it is unheard of. You can help Maddi. You can help future families. Share this blog and our facebook page. Help raise awareness for this rare disease and in the process, possibly save a life.