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  • Writer's pictureEmily Johnson


Updated: Jan 12, 2021

Part 1 of a series

***Trigger warning for potentially distressing material (childhood illness, violence, suicidal ideations)

It was Friday January 10th 2020 - the day our child disappeared. I expected Miles to hop off the bus with his usual smile and glee about Friday night pizza and “boy movie night’ but instead I was met with a wave of anger as he pushed past me to get into the house. The intensity of the anger was concerning. As the weekend unfolded he exhibited extremely irritable behavior and his anger escalated even more. Ty and I questioned whether something was going on at school but Miles reported that everything was just fine. I emailed his teacher who verified that there were no problems with any of his peers. So that following week I made an appointment with the pediatrician.

Something was going on … perhaps he just needed some counseling. No problem I thought. We can get him into counseling. And that’s exactly what the pediatrician recommended. As we waited for a counseling appointment Miles’ behavior continued to rapidly change. He literally had become a different child and it was frightening. I called the pediatrician’s office back begging for a counseling appointment and was told we would have to wait a month.

Things continued to spiral out of control. Miles became violent and physically destructive in our home. I kept emailing his teacher but the report was always the same - everything at school was fine.

Super Bowl Sunday arrived and instead of watching the halftime show we were calling the police. A good friend drove to our house to be with our younger son Will while we talked to the police and tried to deescalate Miles. The next day we had a mobile crisis counselor come to our home. The day after that we went back to the pediatrician who said maybe this is ADHD and we were referred to a psychiatrist. We had to call mobile crisis back a few days later only to be told by the counselor who responded to our home that we needed to lock Miles in his room and “take our parental power back.”

We kept managing as best we could. We barely slept. We kept working and caring for our younger son. We were in complete crisis with no relief in sight. Our once happy and healthy boy had disappeared. He started talking about wanting to die and took the screens out of his bedroom window as he threatened to jump. With no other choice we brought him to the emergency department.

Around this time I started researching his symptoms and stumbled upon a diagnosis I had briefly learned about at a nursing conference that I attended in 2019. The diagnosis of PANDAS

(Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) jumped out at me. I was shocked as I read the diagnostic criteria. Miles had every single symptom.

I felt relieved to have found an answer. But my relief was short lived as our pediatrician was skeptical of the diagnosis and we started to have recurrent ER visits.

We were getting nowhere fast.

Part 2 - The Journey to Diagnosis (Not All Roads Lead to Boston)

(coming soon)

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