Screams of rage. Dilated pupils. Night terrors. Hallucinations. Holes in walls. Anxiety.
Those are just some of the symptoms we witnessed as our son fell off the ledge of normal childhood and into the pits of PANS. He had a perfect storm the week before: walking pneumonia while double vaccinated with two combo shots on accident, and then strep all within a month. His immune system tanked.
There are some really common struggles when it comes to getting diagnosis. First, is that most of these symptoms are correlated with psychiatric conditions and parents are told to see behavioral therapy or be evaluated for a list of psychiatric disorders. Secondly, there are the doctors who simply do not believe in PANDAS/PANS. These providers are dismissing parent’s concerns, sometimes elevating it to reporting to authorities for medical abuse. This is the biggest struggle to me. I still cannot tell a doctor my son’s medical history without a wave of anxiety. Sometimes I just flat out say “I know it’s controversial and I’m not sure how you feel about it, but he has PANS.” Usually they say literally nothing, sometimes I get a side-eye. Once I got a “huh?”
I recently saw a post going around the parent groups on Facebook about a Reddit thread where doctors are completely dismissing PANDAS and PANS as just a psychiatric condition. Misdiagnoses happen every day, all the time. But we cannot look at PANDAS as one giant misdiagnosis when it should be on a working list of things to rule out.
Sometimes I look at my now functioning 17-year-old and wonder what could have happened to him and us if we didn’t have access to the internet. If I didn’t push harder and refuse to accept that he was suddenly an ODD child. If we blindly believed that first doctor who told us he just needed behavioral therapy and some extra parenting. He absolutely would not be where he is now: driving, working, socializing, about to go to prom.
I think of all the little ones who will be facing this path and I hope they are given the right medical professionals who will open their minds to all possibilities. I hope they are graced with angels of doctors who provide the right testing and resources. I hope they get diagnosed early and treated quickly and can go on about their lives. That is my ultimate goal with this page.
