What a sneaky, sneaky, disease…

Every day, it seemed as if a small piece of Maddi was returning to us. Every day she laughs a little more. Dances a little more. Eats a little more. It was easy to settle into feeling like she was making a full recovery, and that we wouldn’t need to do anything further.

Then she had another seizure.

and well, Damn it.

Up until this point, we hadn’t seen any break through seizure activity. So, of course, I was feeling hopeful, and less anxious. I was starting to sleep a little better at night, worrying less and less that she would have any more seizure activity.

Also, no break through seizures mean the disease progression is slowing, and the treatment is working.

This seizure just shows that her disease is still very much at work, and more aggressive treatment is needed to stop it from attacking her brain.

A seizure means the clock resets, and we have a year from today to be seizure free, before we can stop taking medications.

The only good out of this situation, is now I feel more comfortable giving the second line treatment. Now there is clear indication that she needs it. I feel less nervous over the side effects.

I feel like in my spare time, I’m reading everything and anything I can find about NMDAR Encephalitis, or even just AE in general. I want to know everything. I feel like if I can gain this huge knowledge of NMDAR, then I can figure out the progression of our life. I need to plan things. That’s just me. Control freak.

I was reading how Autoimmune Encephalitis, regardless of antibody type, can mirror a Traumatic Brain Injury (TBI), especially during the recovery phase. Which means, that during her recovery, Maddi could experience some of the same things that someone with a TBI does, such as aggression, irritability, acquired ADD, difficult concentrating, memory loss, etc.

Maddi has been struggling with short term memory loss. She’s also been struggling with thought processing. She’s also acquired some very impulsive behavior: making noises, repeating sounds, tapping, and not following directions. It’s hard to see her be so unlike her normal self. I’ve been reminding myself often that she can’t help these behaviors.

I so hope that this second line treatment can return our girl to us.

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