I’m Not Sure… Some Sort of Psychosis: Our Experience with PANDAS

I keep putting off writing this story. It’s hard to think about it even 6 years later. But I want to write it to help moms with really sick kids know they aren’t alone and to shine a light on an autoimmune disorder that turned our world upside down for a few years.

It was the summer before my daughter’s sophomore year of high school. She was excited to go to summer camp with her friends in Michigan. We dropped off a normal, bright, happy teenager. We picked up a very different child.

I remember getting a disturbing text from her while she was at camp, “Pray for me, I feel shattered.” Shattered? I wasn’t sure what she meant by that. But in hindsight, it was a perfect description. When we picked her up, she wouldn’t make eye contact. She couldn’t remember significant things that had happened at camp. She talked about staying up all night long asking her counselor questions, which didn’t seem to out of the ordinary until we learned more. When we got her back to the vacation house, she kept asking the same questions over and over again. She wanted to hold our hand if we walked outside. She was paranoid about spiders being in her bed and would not sleep in her bed alone. We took her to the emergency room, but they couldn’t find anything wrong.

When we got home, the symptoms simmered down a bit and school started. But within a week, they flared up again, this time worse than the first. She was basically non-responsive to conversation. When I asked her to write down answers to my questions, her handwriting looked like a second-grader. She couldn’t sleep. I called my friend whose husband was a physician and he assessed her in his living room that Saturday afternoon.

“I’m not sure what this is,” he said, “some sort of psychosis. But we will run some tests and figure it out.” Psychosis? That wasn’t in my mommy handbook. I didn’t even know who to call at that point. Which friend do you call when your kid has psychosis? Do they set up a meal train for psychosis? I was terrified and lonely. The next few days were overwhelming. Was it seizures? Encephalitis? Eventually, my pediatrician called for a test that measured the strep antibodies in her system, and we had a diagnosis: PANDAS.

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Basically, it’s a neurological autoimmune disorder where the immune system attacks the brain causing sudden rapid-onset symptoms such as OCD, tics, severe separation anxiety, regressive behavior, urinary frequency, acute handwriting difficulty, and insomnia. It’s the result of autoimmune antibodies mistakenly attacking an area of the brain rather than the intended infectious agent.

Now what? Fortunately, there was a PANDAS specialist only two hours from where we lived in Orlando. We got an appointment with her and started on a high dose of antibiotics and anti-inflammatories. Meanwhile, we saw a psychiatrist to deal with her overwhelming obsessive thoughts, depression and anxiety. I had to sit with her to encourage her to eat every single bite of food. She had night terrors, unreasonable fears. It was impossible to go to school. We hired a tutor. We went to counseling. Many days we didn’t leave the house. It was so, so hard. Then one day, it got so bad that we had no choice but to hospitalize her for her own safety. Checking my daughter into a mental hospital the week before her 16th birthday was one of the worst things I have ever endured. But we got through it. She was released the day before her birthday, we changed medications and slowly, what felt like a very long, very bad dream, subsided.

During those two years, there were days it was all I could do to get up and get dressed in the morning. I read a psalm every day to remind me who was in control and that God was intimately acquainted with my trial. I prayed for mercy, and God gave me joy. We prayed for healing, and in His perfect timing He answered.

Today, you would never know that she went through that horrible season. Unless you asked about her faith or how she feels about mental health issues or about the girl she mentors who struggles with something similar. My girl is a beautiful, healthy, wise, and strong young adult. It’s good for me to look back and remember how God used that season to grow my faith and to help me depend on God and others when I thought I couldn’t do another day.

If you’re reading this and the symptoms sound similar, please ask your doctor about PANDAS.