Two New York families, two children, and the same wall. Both spent years collecting diagnoses that did not fit. Both were eventually told what would help. Both were told their insurance would not pay for it.
Sage’s Journey
Four diagnoses and five medications before anyone said PANS. When treatment finally worked, her family paid for it themselves.
The summer before she turned two, Sage went from being a normal, happy toddler to frequently raging and screaming. Simple tasks like getting dressed in the morning, or even requesting and receiving a glass of water, often triggered wild tantrums that would completely derail normal family routines. Though friends and family suggested it was the terrible twos, the behavior never went away. As Sage grew, the emotions and behaviors grew along with her. We couldn’t play board games, because if she lost she would try to rip them up or throw them across the room. Going to museums or community events could lead to disaster. Even driving short distances could be dangerous, because her sudden rages could lead her to throw things or unbuckle her seatbelt and leap at her brother. At times she was physically violent, she was prone to attempting to flee in large public places and she also spoke of wanting to die. But there were also baffling periods of normalcy. Sometimes they would last only for an afternoon or a day or two, but sometimes they lasted for months.
Over the years, she was diagnosed variously with anxiety, oppositional defiant disorder, ADHD, and OCD. She was prescribed Prozac, Zoloft, Vyvanse, lorazepam, and even the antipsychotic Abilify. All either did nothing or made the situation worse. At age 7 she was found to have numerous tick borne illnesses, and treating those brought real relief for nearly a year. Then things fell apart again. That’s when Sage was diagnosed with PANS. New antibiotics helped, but it wasn’t until we were able to get IVIG that things changed long term.
We were unable to get insurance coverage because the company did not dignify the PANS diagnosis, but I was lucky enough to be able to afford a number of doses. Later, Sage was found to have another autoimmune disease that requires IVIG and insurance does cover. That has been life changing. Not only is the other illness being treated, but Sage’s emotional dysregulation is almost all gone. She is a happy, healthy middle schooler getting straight As, playing sports and enjoying a busy social schedule.
Matthew’s Journey
More than three months of third grade missed. The treatment his doctor recommended was never tried, because it was not covered.
Matthew was initially diagnosed with anxiety, ADHD, and a possible autism spectrum disorder. At age 6, he was placed on antipsychotics, which masked his symptoms. By age 8, nearly every morning of third grade, Matthew would vomit to avoid stressors at school. If he managed to attend, his day was filled with crippling anxiety and physical symptoms of distress, often misattributed to other diagnoses. At his worst, he expressed that he no longer wanted to live. Matthew missed more than three months of third grade. During this time, his family tried to identify why he struggled and to find a new psychiatrist after his prior specialist closed her practice. This journey led to a PANDAS-knowledgeable practice that implemented a multi-pronged approach. Strep and other infections were identified, and PANDAS/PANS was added to his diagnoses. A pragmatic speech delay and sensory processing disorder were also identified. During his worst flare, IVIG was suggested as a treatment. However, the costs were not covered by insurance and would have to be paid out of pocket. With no guarantees of success and the treatment being financially out of reach, his provider worked with the family to find alternative approaches.
With the right support and treatment, Matthew is now engaging with people, attending school, playing guitar, and honing his tennis skills. This progress started with an accurate diagnosis and appropriate treatment. Although IVIG was not pursued, his family was fortunate enough to afford various therapies, including occupational therapy, speech-language therapy for his pragmatic speech delay, mental health care, chiropractic care, and neurofeedback. Four years later, Matthew is thriving in middle school, with minimal absences due to health issues.
Sage and Matthew both got better. Neither of them got there because an insurance company paid for it.
Two bills before the New York legislature would require health plans to cover PANS treatment when a physician certifies in writing that it is medically necessary. Read S10208 and A9659, or see the organizations backing them.