Everything from regular school, homeschool, homebound instruction, emotional support classes, and wraparound instruction
Getting the correct diagnosis and appropriate treatment has a profound effect on PANS PANDAS behaviors and symptoms. This PANS PANDAS story is a classic example of how incorrect diagnosis and treatment can lead to behavior that is challenging to accommodate in a typical school setting. However, once treatment had begun, rapid shifts in behaviors occurred. Ultimately, his placement and supports at school changed from general education to homeschool to homebound to an emotional disturbance classroom and then back to general mainstreamed education with supports.
Our story started with one phone call. A phone call from the school, telling me my five-year-old son, Evan, had run away from the playground and was very upset. Nothing had happened to upset him at school or home, but he could not get himself under control. After that initial phone call, we would receive many more from the school throughout the years. It got to the point that I was afraid to answer the phone because I knew. I knew it was the school receptionist asking me to come to get my son because he was too disruptive for them to handle. My son, who had been a funny, intelligent, happy kid, was now destroying the classroom, making threats to himself and anyone around him. Our initial appointment with the pediatrician landed us with an ADHD diagnosis and a prescription. After a few months, we realized this diagnosis was not correct. We were referred to a psychologist who diagnosed my son with ODD (Oppositional Defiance Disorder), ADHD, Generalized Anxiety Disorder, and Conduct Disorder. His recommendations were to find a Psychiatrist who can administer stronger medications and a Child Specific Aid for my son while he was at school. We were put on a waiting list for several Psychiatrists and started the wraparound services.
By the time he was in first grade, he had been suspended, had detention, and rarely made it through the school day without me picking him up. He was extremely aggressive towards everyone and himself. At one point, we had to remove all the knives in the house and keep him in line of sight vision 24 hours a day. We had several meetings with our school and decided he needed a 504 plan and more services. We started a family-based therapy program in school and at home. The school was at a loss about how to handle his explosive behaviors. They recommended an emotional support classroom at another school farther away, which was infuriating to me. Instead of helping him, all they could suggest was sending him away. We had very little success with the 504 plan because of staffing issues, and it was frustrating. We decided to give it a try anyway!
In the midst of trying to figure out what to do for schooling, we continued to try to find answers about his behavior. He kept regressing, didn’t feel good, never slept, had dark circles under his eyes, and was just miserable all the time. At one point, our school called Community Crisis because my son was threatening to hurt the teacher and himself with an actual plan in place. That’s when things got very scary!! We had several visits from social workers who now had to decide if he needed inpatient psychiatric care. We had an evaluation at the psychiatric center, which recommended a day program but didn’t have anything for a 6-year-old. Their only advice was to admit him to the psychiatric hospital for 10 days and start Psych meds right away. I could not do this!!
We decided to pull him from Public Education and try homeschooling him for the remainder of the year. In the meantime, we continued family-based therapy and started weekly counseling with a local Psychologist. After a few months of weekly visits, our counselor suggested a new approach. She felt that Evan’s symptoms and behaviors didn’t match the multitude of diagnoses he had been given and mentioned PANDAS!!!! I had never heard of this before, but ultimately it saved my son and our family!!! We were out of options, so we decided to explore the diagnosis. We saw two different neurologists who were not convinced of PANDAS and suggested Psychiatric care. Then we found a Doctor who specializes in PANDAS. Thousands of dollars later, several appointments and sooo much bloodwork showed my son had active strep, Coxsackie A, Antibody deficiency, and several vitamin deficiencies. I was shocked and so thankful we finally found an answer. Evan started antibiotic and anti-viral treatments right away. We also started several vitamin treatments and Medical Marijuana to rebuild his immune system.
Now that we had an actual diagnosis, we regrouped with the school. We decided to give Homebound Instruction a try. Because his immune system was basically inactive, we kept him home, and a teacher would come and teach him at our house. I know they had good intentions, but this did not work at all. It took weeks even to find a teacher willing to do this, and once we did, she barely made the scheduled appointments. We finished second grade with mom once again being the teacher as well.
By third grade, we saw so many improvements in Evan’s health. He was finally feeling better!! The dark circles were disappearing, and he was sleeping! His mood had drastically become calmer, and he was smiling again. Evan was doing so well; we decided to put him into an Emotional Support Classroom in another district. We started with half days for the first two months. The social workers and support staff were fabulous at this school! Evan was still struggling with behaviors and still needed support, but they handled it and helped him work through it. WITHOUT CALLING ME TO PICK HIM UP!!
By December, Evan was going full days in this classroom and kept improving. The social workers recommended he return to his regular education classes at his home district before the end of the year. Evan was back in his home district by January. He had an updated 504 plan in place and several support staff in place for him if he needed it. It is amazing how different we were treated now that he had a medical diagnosis. Everyone was suddenly willing to help.
PANDAS has been a long struggle and has changed so many things in our lives. We have experienced regular school, homeschool, homebound instruction, emotional support classes, and wraparound instruction. I think the biggest thing you can do for your PANDAS kid is never to give up on them!! Find what works for them and always advocate for their health and education. When someone tells you they cant accommodate your child, make them listen or find someone else who will!! Evan has come such a long way and is a happy, funny 10-year-old. We still have occasional flares, and he still needs support emotionally at times, but he knows we are there to help him!
Signed Kristie from PA
Learn more about PANS PANDAS in the school setting. PANS PANDAS is a medical condition in which symptoms affect a student’s ability to attend school and learn.