My son Rico is 10 years old, and has battled an autoimmune brain disease called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) all of his life. It is an autoimmune disease caused by strep and other illnesses, and causes symptoms like OCD, Tourette, ADHD, ODD, bipolar behaviors, anxiety and more.
We were initially told at 2 he had multiple developmental delays, but he would have periods where he seemed almost neurotypical, and then would have severe regression and behavior issues. At age 6, that diagnosis changed to atypical autism, ADHD and ODD (Oppositional Defiant Disorder). We were told he would have this all his life, which was pretty depressing. As his parents, we were convinced there was a deeper cause to his symptoms.
We got involved with biomedical treatments for autism and started the GFCF diet for him, which helped but was not by any means a cure. However, his health declined a lot over the next year and he was constantly sick with various infections, including staph. He would develop severe OCD and rages and anxiety that disappeared on antibiotics, only to reappear when he was getting sick or got off of them. Finally, we came across a doctor who thought to test him for PANDAS, and he tested positive for Strep and Epstein Barr Virus infections. The next two years were a constant battle with PANDAS, which was frustrating for Rico. He wanted so badly to make friends and be like all the other kids, but many times it was hard to control his body and moods. He had Syndham’s Chorea and tics which were out of his control, and would often cry or grow angry over very minor things. He woke up with nightmares most nights, and hardly ever slept through the night.
When his condition got really bad, it was hard to run and play. He could hardly move his legs to run, and his muscle tone declined. Friends and family and even school staff often did not understand his behavior was not under his control, because of an autoimmune process going on in his brain. Rico has always been a fighter. When the kids down the street couldn’t play, he would go knock on their door every day during the week, until their parents said yes. Even when he had a bad day at school, he would work hard to turn his week around and have good marks. Finally, last year we discovered Rico’s PANDAS was so severe because he had undiagnosed lyme disease, mycoplasma, and HHV-6 virus. He’s made tremendous progress from treating these infections and from going on low dose naltrexone, an immune modulator.
This year Rico had straight A’s and got the Principal’s award at school. He continues to exceed all his speech and behavior goals as the year goes on, and is now strong and healthy enough to play sports. He has several friends at school and often makes friends with other kids wherever he goes. Rico still has good days and bad days with his condition, but as we uncover more about his health issues (like hypothyroidism) and treat them, the autoimmune condition is starting to get milder. When Rico is having a bad day, he often prays that God will help him control his body and behavior, and this has been an incredible help to him. He has also been an incredible role model to his younger brother, who has a milder form of PANDAS. They both enjoy going to church, and our local church has been so welcoming and wonderful to Rico. This year he was able to leave his special needs Sunday school class and go with the regular class, which has been a great experience for him.
PANDAS is still being researched and there’s no real effective treatment for now, except antibiotics long term, and IVIG. Rico and our family will never stop looking for the most effective treatment, and we will never stop fighting this disease. We have some incredible doctors and a naturopath who have helped Rico and our other son with PANDAS so much. We hope our discoveries and our journey can help other PANDAS families as well.
Never give up hope, and never stop praying. God is bigger than PANDAS, than cancer, than anything else life can throw our way.