As I made my way through the halls to my neurologist’s office last May, I stopped in my tracks as I saw a face I recognized. She was receiving IVIG and roaming the halls hooked up to an IV bag pole, accompanied by her mother and a nurse. She was exhausted. There was no light in her eyes. She had a sense of burden and deep sadness about her that penetrated to the depths of her soul.
Once you’ve seen the face of a child with PANDAS, you can never forget it.
Over the last year, I’ve heard so many heartbreaking stories about what this illness can do. I’ve seen the look of terror in children’s faces and the grief and weariness in the parents’ eyes. I’ve watched as my own life fell apart, flare by flare, and I’ve spent what should’ve been my best years wanting nothing more than to find my lost mind.
Although PANDAS and PANS are curable, getting a diagnosis, let alone proper treatment, is far too difficult. It took me eight years to find an answer. It took me declining so much that I could no longer walk, lost twelve pounds in two weeks (that I absolutely didn’t have to lose), and was psych-ward-worthy depressed and suicidal before doctors finally admitted that there could be a single cause to an alleged list of seven different syndromes and illnesses.
And I am one of the lucky ones.
My story has a happy ending. After two IVIG’s, a tonsillectomy, and a year of antibiotics and steroids, today, though I still have symptoms and take medications, I have my life back. I’m living independently, attending a prestigious university, earning straight-A’s, and making my mark in my chosen field. But without treatment, I would still be spending my days homebound, sleeping for up to twenty hours each day, unable to walk, and constantly watched by my parents so I wouldn’t hurt myself.
Sadly, my story may still be the exception—not because PANDAS is rare, but because it is common and many people may never receive a diagnosis. PANDAS/PANS is likely responsible for as much as 25% of cases of childhood OCD and Tourette’s. As many as 1 in 200 children may have this devastating condition. While some may outgrow it, for others like me, left untreated, it could lead to a lifetime of mental illness and disability.
To make matters worse, there are only a handful of doctors in the US who are considered to be experts in treating PANDAS and PANS. Their practices are overrun with cases. Waiting lists can be long. And when you finally do get an appointment and a diagnosis, treatments such as IVIG and plasmapheresis are outrageously expensive and are often not completely covered by insurance. If you’re fortunate, antibiotics might be enough to put you into remission, but sometimes, insurance won’t cover these, either.
While thousands of children and families are suffering, too many doctors are debating whether this condition even exists. Many doctors have the nerve to send families on their way, blaming debilitating symptoms on “bad parenting” or “school stress.” If we had a dime for every time we were told PANDAS is “controversial” or “not well understood,” perhaps we could pay for our $15,000 IVIG treatments!
Over 370,000 children and teens in America (1 in 200) need treatment and shouldn’t have to travel hundreds of miles just to find a doctor who won’t dismiss their symptoms. Tens of thousands still just need a diagnosis.
October 9th is PANDAS/PANS Awareness Day. Help us raise awareness. Help us tell more doctors and psychologists so that it doesn’t take so many years of suffering to get a diagnosis. Help us get more insurance companies to recognize PANS and cover more treatments so that more patients can get the care they need.
PANDAS/PANS needs awareness because that sad girl in the hallway is in every elementary school across America—yet many of her may never know why she suddenly lost her joy and personality.
I believe that if those of us who have been diagnosed keep making noise, there will be a day when it is unheard of for a doctor to deny the existence of such a devastating syndrome. I believe there will be a day when the only thing parents have to worry about when their child gets PANS is helping him get better—not finding a believing doctor, not wondering how they can bring a terrified and uncontrollable child across the country for a consultation, and not paying for treatment.
But until then, I will keep writing and raising awareness, because for so many, that day can’t come soon enough.
PANS/PANDAS is an autoimmune reaction triggered by Strep, Pneumonia, Lyme, Mono, Stress, etc. resulting in an acute onset of neuropsychiatric symptoms that can include: separation anxiety, OCD, tics, age regression, ADHD, sleep difficulties, personality changes, urinary feequency, irritability, rage, sensory sensitivities, deterioration in learning abilities, and anorexia.
For scientific research showing why PANS/PANDAS is a serious and legitimate medical disorder that can be treated successfully, please refer to these sources: