Last night, I was privileged to sit in the presence of some brave pioneers. If given the choice, I imagine they would opt to not be in this group. Yet, here they were. Parents of children afflicted with a devastating and mysterious condition known as PANDAS or PANS. Children and teens who have suffered for years with not only the brutal symptoms of the disorder….but the chronic failings of our health care industry and the skepticism and judgments of doctors and specialists. Yes, here they were. These brave pioneers.

They had come together at Showcase Cinemas in Foxborough, MA for a special viewing of the documentary My Kid Is Not Crazy: A Search for Hope in the Face of Misdiagnosis. The film was followed by a Q&A session, led by the documentary’s director, Tim Sorel, and sponsored by the New England PANS/PANDAS Association.

The 87-minute documentary follows the lives of six families as they battle not only the symptoms of PANS/PANDAS but the medical and mental health communities as well. The disorder is marked by a rapid onset (often overnight) of OCD and tic symptoms as well as restrictive eating, severe anxiety, and personality changes. Children who, one day were playful and developmentally-typical, seemingly change overnight into writhing, screaming, tortured versions of their normal selves.

Watching these graphic displays of torment throughout the film is gut-wrenching and even the most hardened of hearts will find themselves moved by the children’s agony. But, the discomfort of the viewer is nothing compared to the frustration, justifiable rage, exhaustion, guilt, and traumatization of the parents of children with PANS/PANDAS. Not only must these parents grapple with the existential quicksand of watching their child succumb suddenly and severely to a perplexing array of symptoms, they must somehow raise their other children with as much normalcy as possible while taking on the medical community in a dogged effort to secure reimbursement for expensive medical treatments, lobby to change legislation, and convince the medical ‘experts’ that their child is not crazy.

This is not a task for the weary.

Director Tim Sorel underscored the absurdity of our current health care system when he told the audience a moving anecdote about his sister who, while succumbing to terminal cancer, urged him to make this documentary. He told of how she came to him in frustration after reading an autobiographical novel about PANS/PANDAS and stated that her insurance company had paid $5 million toward her medical care — to extend temporarily the life of a person suffering from a terminal illness. And, yet, the parents of children with PANS/PANDAS cannot obtain coverage for the necessary antibiotics, IVIG treatments, and other interventions their child requires to return to normal or near-normal functioning. All because the diagnosis is  “controversial.”

The film begins by following the work of Dr. Susan Swedo, one of the heroes in what is
otherwise an epic tragedy. Over 30 years ago, Dr. Swedo began linking cases of strep infections with the clinical presentation of PANS/PANDAS and, from there, a theory bloomed that undiagnosed strep causes an autoimmune reaction and inflammation of the brain resulting in what appears to be psychiatric symptoms….with a medical origin.

This is relatively unchartered territory: the notion that the mind/body connection could be this obvious, that a subset of children suffering from severe psychiatric symptoms don’t need psychotropic medication and involuntary hospitalization — they need an urgent and accurate diagnosis, antibiotics, and a return to normal functioning. Big Pharma is not happy. And, guess who provided funding for the researchers who deemed PANDAS “controversial?” You’ve got it. Big Pharma.

So, it’s really no surprise how this diagnosis became “controversial”: a female doctor (the nerve!) proposed a mind/body connection that flies in the face of how rigidly the medical and mental health care systems are separated AND threatens to funnel the money away from Big Pharma’s pockets. That’s not “controversial.” That’s some systemic scam artistry. Pay no attention to the man behind the curtain.

“My Kid Is Not Crazy” is a compelling film that sheds light on the issues surrounding PANS/PANDAS and begs the viewer — no, demands that the viewer — not turn away and ignore these children and their families. Egos and self-interests are preventing these children from getting the medical care they require. It compounds their stigmatization and heaps PTSD on to the laundry list of conditions these children and their parents will struggle with in the years to come. Every second of every minute of every day that goes by without an accurate diagnosis and the proper medical interventions takes these children farther down the rabbit hole, from which there may be no escape. Early diagnosis and treatment are critical. While the world waits, the clock ticks.

Next Worcester OCD Lecture Series: Understanding PANS/PANDAS. Click here for more info.

Jayme M. Valdez, LMHC is a licensed mental health counselor in private practice in Worcester, MA, specializing in the treatment of OCD, phobias, and other anxiety disorders.

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