Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review.  New York is also considering similar policies, and several others including Virginia have successfully implemented them.

To those who have never heard of PANS/PANDAS or seen the devastating effects firsthand, perhaps Wisconsin’s proposed PANS/PANDAS Advisory Council is viewed as yet another tentacle of government bureaucracy that serves a small minority of people.

However, the truth is that PANS/PANDAS is one of the biggest public health crises today, affecting 1 in 200 people, but it’s gone ignored and mistreated by the medical community at large.

Greater awareness would allow thousands of people with this disorder (many of whom are children and teens) to become productive members of society and escape a lifetime of ineffective psychiatric care.

I know firsthand that PANS/PANDAS has catastrophic effects on those who suffer from it…

As I made my way through the halls to my neurologist’s office a few months ago, I stopped in my tracks as I saw a face I recognized. She was a little girl receiving IVIG treatment 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 PANS, you can never forget it.

Over the past three years since I was diagnosed at nineteen years old, 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. 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, stopped eating, became detached from reality, existed in a constant half-conscious state, and threatened to kill myself 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 three IVIG treatments, a tonsillectomy, IV steroids, and several years of antibiotics, though I still have some symptoms and take medications, I have my life back. I graduated from a prestigious college summa cum laude, earning straight-A’s and leaving my mark in my chosen field. But without treatment, I would still be spending my days home-bound, unable to work or go to school, and constantly being watched by my parents so I wouldn’t hurt myself.

Sadly, my story may still be the exception—not because PANS/PANDAS is rare, but because it is common and many people may never receive a diagnosis. The disease is likely responsible for as much as 25% of cases of childhood OCD and Tourette’s. As many as 1 in 200 people may have this devastating condition. Though a few may outgrow it without medical interventions, for plenty of others like me, left untreated, it can lead to a lifetime of mental illness and disability.

But the deleterious effects of PANS/PANDAS extend far beyond those who have it and their loved ones...

PANS/PANDAS is a burden on taxpayers. It can be avoided with awareness and proper treatment.

It’s NOT a mental illness—it’s an infection-triggered autoimmune attack against the brain that presents with debilitating psychiatric and neurological symptoms such as the ones I described above (and many others from which I was spared). People with PANS/PANDAS are mistaken for psychiatric cases and treated with medications and therapy that fail to improve them.

The average inpatient psychiatric stay in a government-run hospital costs $2000 per day, as estimated by Becker’s Hospital CFO Report. Those with PANS often undergo multiple hospitalizations because they are misdiagnosed with mental illness, and standard treatments for mental illness cannot control an autoimmune disease. They are therefore sentenced to a lifetime of ineffective psychiatric care and mental health hospitalizations that yield no lasting improvements.

For example, a case study by Standford University describes a thirteen-year-old girl who was misdiagnosed with bipolar disorder and then spent two years in psychiatric institutions and group homes. After she was diagnosed and treated for PANS, she returned to a “normal teenage life at home” and will grow up to be a productive member of society. This is not an isolated case: there are likely countless others with incapacitating symptoms which could be remedied with adequate treatment for PANS.

Moreover, many children with PANS present with learning disabilities and behavior disorders and are placed in special education programs in public schools.  According to a report by the Special Education Expenditure Project, educating a single student with disabilities costs twice as much as a non-special needs student.

If children with PANS receive medical treatments to stop the autoimmune attacks against their brains, they can be mainstreamed and each save the state an estimated $6000 per year.  If 1 in 200 of the 867,000 public school students in Wisconsin are in special ed because of PANS/PANDAS, treating them would save the school system $26 million every year.

Unfortunately, help for PANS is difficult to find due to a lack of awareness in the medical community.

Because PANS/PANDAS was only discovered in the 1990’s, there are still only a handful of doctors in the USA who are considered to be experts in treating PANS/PANDAS, thanks to a lack of awareness and not enough research funding.  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 often not completely covered by insurance (though the net effect of treating PANS is far less costly). If you’re fortunate, antibiotics might be enough to put you into remission, but sometimes, insurance won’t cover these, either, because they don’t understand that infections can cause some seemingly psychiatric illnesses.

Thousands of children and families are suffering, but too many uninformed doctors have the nerve to send families on their way, blaming debilitating symptoms on “bad parenting” or “school stress.” If we all had a dime for every time we were told PANDAS is “controversial” or “not well understood,” perhaps everyone could afford a $15,000 IVIG treatment!

 

So to all the legislators considering a bill that will educate medical professionals on PANS… Please, help us.

Help us raise awareness. Help us inform more doctors, psychologists, and school nurses so that it doesn’t take people like me 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. Help us release thousands of people with undiagnosed and untreated PANS from a lifetime sentence of illness, disability, and taxpayer-funded mental health services that are ineffective for a treatable autoimmune disease.

PANDAS/PANS needs awareness because that sad girl I saw in the hallway that day is in every school and mental health ward across America—yet many of her may never get better or know what stole her childhood and personality.

PANS/PANDAS is not rare—just rarely diagnosed.

With greater awareness of PANS/PANDAS and more research, there can be a day when it’s unheard of for a doctor to deny the existence of such a devastating syndrome. There can 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.

There can be a day when people with PANS get proper treatment promptly, which spares them a lifetime of suffering, needless psychiatric hospitalizations, and years in special education programs—but only if statewide and nationwide measures are taken to increase awareness.

But until then, I will keep writing and lobbying for awareness because for so many, that day can’t come soon enough.

 


WI Senate Bill 535, which establishes a statewide advisory council on PANS, will die if the Senate Committee does not approve it by this Friday, February 23rd. You can help even if you don’t live in Wisconsin by sending messages and social media posts to these Senators.  The more states that establish councils like this, the more of a precedent it sets for other states to follow suit. 

Contact the Senators here:

Senator Kapenga

Senator Stroebel

 

PANS Symptoms Pic-small

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 frequency, 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:

PANDAS Physicians Network Research Library

Moleculera Labs Research Library

 

A version of this post originally appeared in October 2015 for PANDAS/PANS Awareness Day.

Share your thoughts. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s