PANDAS'S ADVOCACY

PANDAS & PANS

On Christmas Eve 2017 after a celebration among friends my daughter couldn’t sleep. A usually happy, social, upbeat, charismatic and academic over achiever changed overnight. Her mind had kept her up all night. It tortured her incessantly about every mistake, every decision and idea that had crossed her path in the past. My husband and I dismissed this behavior as perhaps preteen hormones.

The days passed and the symptoms worsened. There was no sleep, only restlessness, repetitive questions. She was terrified of being alone, lost interest in her phone and feared going outside. She stopped eating and started saying things that didn’t make sense. “Mom, I feel my brain getting smaller “, she would say, “I feel it, I feel it”. As the days went by her glance was glossy, distant and off as if she was drugged. She started having difficulty finishing a sentence, following simple one step directions and one day she wet the bed. We of course reached out to her pediatrician. He looked at her and couldn’t recognize her complete transformation, surely this child had been drugged or abused. He had my husband and I step out of the consultation room to question my daughter alone. He ordered some tests and examined her. He couldn’t find any physical evidence that would produce these symptoms. This was all psychological. We were referred to a psychologist and left the doctor’s office without answers. A week later my daughter collapsed and had a seizure. The therapist we had been seeing suggested we ruled out a brain tumor, she said her symptoms looked like schizophrenia but it wasn’t possible for her to have been normal three weeks ago and suddenly “catch” schizophrenia.

As we faced the horror of a possible brain tumor, I received a phone call from our daughter’s therapist. She told me she had researched my daughter’s symptoms and found PANDAS. She told us to go back to the pediatrician and run strep tests on her. I immediately started researching about this thing called PANDAS. Through a mother on a PANDAS Facebook group I got a list of blood tests she recommended me to ask for. I went back to the pediatrician and said, here, this is what I want you to look for. When the tests came back the truth was revealed. It turns out my daughter had not only a strep infection but also had a mycoplasma infection and several other pathogens in her blood. The pediatrician with his mouth opened just said “I couldn’t have known”. Our Pandas journey had started. .