I am not a doctor or a healthcare professional. I’m just a mom of three sweet, smart, and loving little boys. But a few months ago — almost overnight — my 8 year old son started to display some alarming and aggressive new behaviors that ended up turning our whole world upside down. He became very irritable, controlling and often didn’t want to go do anything outside of the home. Then he started to fight us on leaving the house at all.
After a few weeks we realized he had developed full blown Obsessive Compulsive Disorder. When we would push him to leave the house to go to a doctor’s appointment or to swim class he would fly into rages, screaming, calling me names and getting physically aggressive. With guidance from his pediatrician and therapist we started treating his OCD with an SSRI and Exposure Response Prevention (ERP) therapy, which we were told is the gold standard treatment for OCD.
He did not respond to the medication and continued to decline, despite his doctor increasing his dosage a couple of times. His rage got worse and was accompanied by suicidal ideation. We ended up at the ER and then he was admitted to our children’s hospital where they said he must have had a bad reaction to the SSRI medication. They didn’t run any tests or labs. They immediately discontinued the Prozac and instead switched him to Zoloft (another SSRI). During those two days in the hospital his extreme hyperactivity continued. He was not himself at all. Upon discharge we started seeing a psychiatrist who took over his medication protocol and his therapist for continued ERP and behavior management.
Things continued to steadily decline. I knew in my gut that something else was wrong. I could tell the meds weren’t helping and I was losing my sweet boy. I listened to every podcast, read every article and text I could find, joined and searched posts in every OCD parent support group on Facebook. OCD consumed Charlie’s life and that of our whole family. He continued to resist going to school but our therapist told us to force him to go, because if you give in to OCD it just gets worse. So we forced him.
Some days we had to carry him to the car kicking and screaming and then escort him in, and then a staff member escorted him to class. This was a kid who loved school last year so much prior to this. He never got one bad behavior report all the previous year. Now I was getting a call from school every day. Then I was being called to pick him up early. And then he barely made it through two hours. We finally had to put him on medically homebound instruction because he couldn’t make it through 10 minutes without an episode. Something more was going on than just OCD — I just knew there was an underlying medical condition causing all of this.
In all of the research I had been doing I stumbled upon something called PANS/PANDAS. As I dug deeper I realized that this was what was happening with my son. Many of the people who have heard of it only know about PANDAS and don’t understand that PANDAS is really just one type of PANS and that both fall under the autoimmune encephalitis umbrella.
PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANS is short for Pediatric Acute-onset Neuropsychiatric Syndrome. Both are really Autoimmune Encephalitis (which is swelling in the brain, usually of the basal ganglia), and vary based on the autoimmune trigger (strep for PANDAS and a variety of other bacterial, viral, or environmental or stress triggers for PANS). All children with these disorders have acute onset of OCD symptoms and/or severe eating restrictions. But they also have a debilitating and baffling set of other neurological symptoms with similarly sudden onset. To be diagnosed with PANDAS/PANS they must have either sudden onset OCD and/or sudden severe eating restrictions (like refusal to eat, complaints of trouble swallowing, etc.) plus two of the following seven criteria:
- Separation anxiety, panic, other forms of anxiety
- Behavioral regression: Kids suddenly acting much younger than they should for their age, such as reverting to baby talk.
- Emotional lability: These children can be severely depressed, even suicidal
- Irritability, aggression and /or severely oppositional behaviors
- Deterioration in school performance: Sudden decline in math and/or reading competence, memory and concentration; increase in hyperactivity
- Motor or sensory abnormalities: Their handwriting and drawing deteriorates dramatically (also linked to regression), and they may be distressed by noise or light.
- Somatic symptoms: These include sleep disturbances, bedwetting and other changes in urinary frequency or intensity.
Besides the sudden onset of OCD, Charlie exhibited some form of every single criteria above. Did his pediatrician diagnose him and start treating him right away? No, Did his therapist and psychiatrist question whether his behavior was truly a mental health issue and suggest looking into an underlying medical cause? No. Because we couldn’t report a recent bout of strep, everyone brushed off my questions about PANS/PANDAS. I described what I was seeing to his therapist and even though she was seeing behavior in her office, she questioned my concerns and stressed that his behavior could be managed with behavior modifications: positive reinforcement, removing privileges, having consequences — all stuff we had used successfully in the past and with our other children. But things that did not work for Charlie because, for behavior modifications to work you have to have some control over your behavior! If your brain is inflamed and causing negative behaviors, you can’t fix that without decreasing the inflammation.
Ultimately, my son tested positive for Lyme, mycoplasma pneumonia, HHV-6 (roseola), and influenza A. Despite this we were dismissed by every mainstream physician we saw (an infectious disease specialist said all of these were false positives!). I finally found an integrative MD who specializes in PANS/PANDAS and Lyme who is treating my son. After a couple of months of treatment my son is 80% better (though if he weren’t on his medication we would regress again and we still have a long road to healing).
I share this story because I truly believe there are a lot of kids out there suffering who aren’t being properly treated or who are being misdiagnosed with psychiatric disorders. I think a lot of the mental health issues we see in both kids and adults are being caused by autoimmune diseases that we don’t know are happening. I think that it shouldn’t take a stubborn and persistent mom with a laptop to figure out what is making her kid sick. But right now, it often does. So I’m here to tell you that YOU KNOW YOUR CHILD. You are your kid’s advocate and you shouldn’t be afraid to listen to your gut, to keep digging for answers, and to stand up and demand proper care.
If you’d like to learn more about PANDAS/PANS I highly recommend the documentaries My Kid Is Not Crazy and Stolen Childhood, available on Amazon Prime (free for Prime members). I also wrote a post that contains a lot of resources for those who may suspect their child has PANS/PANDAS but they don’t know where to start, which you can find here and I share a lot in my instagram feed and stories if you’d like to follow along.
If you have PANS/PANDAS or suspect your child does, don’t give up! Help is out there, you just have to hunt and advocate for it. But you are not alone.