What is Autoimmune Encephalitis (AE)?

I got Maddi’s test results two Saturday’s ago. We had just been discharged from the hospital without answers. Well, discharged and told to get some parenting classes. None the less, no answers. I opened up the test result and noted that it was abnormal. NMDA Receptor AB Serum: results 1:5120. (normal 1:10)

What in the world is that?

I searched the internet frantically trying to make sense of the results. It was a Saturday morning. We wouldn’t see our Pediatrician until Monday morning. All the results I could find sounded insane. loss of movement, speech, cognitive functioning, seizures, psychiatric symptoms…. Some of these things sounded like Maddilyn, but not everything. Could this be what was going on?

“positive test results most always indicate a teratoma in girls.”

A TUMOR??? I was so overwhelmed with anxiety and fear, that I just stopped. I couldn’t look any further. I couldn’t think that this was the problem. At the same time, Maddi continued to get worse. Over the weekend she became more aggressive, more combative. She started to have episodes during the day that looked and felt like a seizure, but due to inconclusive tests at the hospital, would not be labeled as a seizure. It wouldn’t be until days later when she suffered a Grand Mal seizure that lasted close to 30 minutes would we get an official diagnosis of Autoimmune Encephalitis: Anti-NMDA receptor type.

From what I can understand, something triggered Maddi’s immune system to begin attacking her brain.

Taken from the aealliance.org website:

Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major challenge in diagnosis is that different symptoms may appear at different times and different levels of intensity, so that the disease may mimic many other disorders. Some patients initially present with either neurological or psychiatric symptoms, further complicating diagnosis.

Symptoms associated with AE can include:

  • weakness or numbness of part of the body
  • loss of balance
  • slowed or blurred speech or loss of ability to speak
  • ataxia
  • involuntary movements
  • distorted vision
  • cognitive impairment
  • memory disturbance
  • decreased level of consciousness – to the point of unresponsiveness, catatonia or coma
  • seizures – (either self-evident, or smaller seizures that show up on an eeg reading)
  • partial or complete loss of appetite for long periods
  • food and drink tasting inedible or triggering nausea
  • excessive eating without feeling sated
  • agitation
  • inability to sleep
  • loss of inhibition
  • rapid, pressured, or involuntary speech
  • hallucinations (visual or auditory) and delirium
  • paranoid thoughts
  • severe anxiety

** I have bolded and underlined Maddi’s symptoms at the time of diagnosis**

We got off easier than most. The disease had only just begun to impact her cognitive functions in the form of short term memory loss, slowed speech, and slowed thought processing. Even though Maddi no longer ran, jumped, skipped, or cartwheeled (as she did almost non-stop before) she had not lost her ability to walk or move.

In a months time, she had lost almost 4lbs from refusing to eat. She hadn’t slept more than an hour or two at a time, her poor brain riddled with seizures all night long. Our happy, vibrant, girl who was so full of life, was this quiet shell, shut down, and disengaged from the world.

When she wasn’t unresponsive, she was belligerent. She would fly off the handle in complete rages. She would hit, kick, claw, and punch us. Any attempts to restrain her only made it worse. She was absolutely not in control of her body. I looked at her, and I couldn’t recognize my little girl. She was so tormented. So uncomfortable. So much in pain.

The night before we were diagnosed, Jason and I sat on the floor in tears, as we held her down to protect her from hurting herself. We were lost. We didn’t know what to do. We agreed that we would need to seek out Psychiatric inpatient treatment because we could no longer keep her safe. I was terrified of doing this, because I was afraid of masking the cause of her symptoms.

God intervened. He had a plan. He put everything into motion to make sure we got that diagnosis.

The admitting Pediatric Team told us: “We did some research. Only 1% of all cases diagnosed present as behavioral only.” It was frustrating to not have her other symptoms considered apart of her diagnosis.

The important thing to note, and what I learned: YOU DO NOT need to meet all criteria to have AE. You do not need to have a Teratoma to have NMDA AE. When it seems like nothing fits, discuss AE, Anti-NMDA Type.

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