“It has been 30 years since we first discovered this disorder. Today, to see symptoms that are not being recognized and a child not being given appropriate care, that is the most frustrating and the most horrible part about all of this.”
Susan Swedo, MD
About The Film
Nine-year-old Kathryn was a normal, healthy child. She was a star student, athlete and dancer. In a matter of days, she would become totally dysfunctional. Kathryn had alarming rapid-onset OCD refusing to eat or drink. She had tremendous separation anxiety and would become panicked if her parents were not in sight. She had trouble sleeping and showed signs of age regression in vocabulary and handwriting.
How did this happen?
Kathryn’s family and many families like them— turned to a fractured medical system, where there is fierce disagreement about how to help their daughter. More often than not, a child with these symptoms would be diagnosed as having mental illness. They’d be treated with anti-psychotic medication, behavior therapy, and even hospitalization.
But more than 30 years ago, Susan Swedo—a doctor with the National Institutes of Health—discovered that an undiagnosed strep infection was the cause of one child’s disabling illness. The more Swedo dug, the more evidence she found: Strep was linked to symptoms normally chalked up to psychiatric illness.
She also discovered how non-accepting modern medicine can be of new ideas.
Swedo has put her reputation and career in jeopardy as she fights to cure the condition she named: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). Neurologists Jonathan Mink, Roger Kurlan, Harvey Singer and others publically ridicule Swedo and her PANDAS theory, creating controversy over diagnoses and treatment. This group has become known on social media as the “non-believers.” The result: the entire pediatric-care industry is confused and doesn’t know what to do.
And it’s the children who suffer.
“My Kid is Not Crazy,” a film by Tim Sorel, tracks the journey of six children and their families as they become tangled in the nightmare of a medical system heavily influenced by the pharmaceutical industry. Here it’s common for a caregiver to prescribe a young child with a Selective Serotonin Uptake Inhibitor (SSRI) but hesitate to prescribe an antibiotic to counteract a potential infectious-based trigger. For some of these kids, what happens after several years is shocking and sad.
Drew Maxwell, now 18, went through more than 11 years of misdiagnoses. From the age of 6, Drew was given more than a dozen psychiatric, anti-anxiety and anti-depressants. She was hospitalized for seven weeks in a psychiatric hospital. The teen became despondent and suicidal. Her tenacious mother Tiffani stuck by her ailing daughter when the rest of Drew’s family abandoned her…writing her off as a psychiatric case.
Fed-up with the lack of response from the medical community, parents like Tiffani use social media to bond by the hundreds of thousands of parents forcing a dialog and a showdown between Swedo and the non-believers.
Soon approaching retirement, the resilient Dr. Susan Swedo has been knocked down but has shown a never-ending ability to keep getting back up. “It has been 30 years since we first discovered this disorder. Today, to see symptoms that are not being recognized and a child not being given appropriate care, that is the most frustrating and the most horrible part about all of this.”