How PANDAS Network Began
…in the words of Founder Diana Pohlman
In 2007, I was like any young parent bursting with pride over my young son entering 2nd grade. Following a
strep throat infection that needed to be retreated several times, he changed dramatically ---suddenly he had fears of contamination, extreme anxiety, hyperactivity, unable to sleep, weeping, rolling on the ground spontaneously, eye dilated, and many other symptoms. I soon discovered that several of his playmates developed strep accompanied by irrational OCD behaviors and anxiety but none suffered to the level my son
did. He continued to decompensate and became more and more sick physically and mentally. I had to do something. Out of desperation I turned to the internet and found parent blogs where two or three parents reported the same behaviors with their child.
I called parents around the country 16 hours every day. In two months, I had connected with 40 families on my phone-chain-lifeline. Each of us had been told 1) there was nothing that could be done; 2) our children could be debilitated for life.
I began PANDAS Network to inform people about the potential catastrophic affects strep throat bacteria can have on a young child’s life. I realized there was a gap in how to use medical testing combined with clinical diagnosis in accurate, efficacious way.
My father had been a physician at Stanford University and my family had a long been connected to this community. I approached many physicians -- pediatrics, neurology, immunology, infectious disease and psychiatry, none came up with an answer. Everyone shook their head that they did not understand. “It is a mystery Diana. He may have Pediatric Huntington’s Disease (this causes the disintegration of the basal ganglia and then death); or late-onset autism, or he was abused.” They explained that MRI’s do not show nerve damage and that even in Alzheimer’s it is only upon autopsy that damage to the brain is shown.
I learned that our current medical testing does not show specific damage to the nerve connections in the brain. I learned that in 50% of all encephalitis cases (brain inflammation causing seizure or death) no bacteria/virus or bad antibody is found. I also learned that our blood assays to detect brain attack by autoimmune reaction to infection have not been developed for over 20 years.
After four months of searching, I discovered Dr. Susan Swedo’s work called, PANDAS : The Clinical Description of the First 50 cases (Am J Psychiatry 1998; 155:264–271). She had been studying strep and an illness in children called, Sydenham Chorea, that has been known for over 100+ years to cause large movement (chorea) and psychiatric issues. She explained in this paper that perhaps strep bacteria were shifting in its etiological manifestations to less movement and more psychiatric.
Stanford U. was “hogtied” legally to do anything because Swedo’s study was too small and use of antibiotics and blood products to clear this illness were “off-label” treatments. I flew to Chicago to one pediatrician’s office, Dr. Miroslav Kovacevic, who saw this illness in a child close to his life. He reassured me Swedo’s ideas would work. I paid cash. My son received IVIG and though there were some setbacks, within one year he was healing.
By 2009, over 600 families had called me as my numbers circulated on blogging forums and
word of mouth spread. PANDAS Network was born to make sure that no parent would have to endure this illness alone. Other parents began answering calls as well and we began to match similar stories. Research studies had been small but we as families could reiterate that we were experiencing what Swedo had seen a decade earlier.
My “table of case histories” was considered credible. Dr. Swedo and Dr. James Leckman, Psychiatry, Yale
Child Studies Center convened at the NIMH 2010 a meeting of 50 experts to discuss the study of PANDAS and the result was a new term coined, PANS that widened the potential triggers beyond strep infections.
By 2013, demand for more doctors and awareness of the illness had grown nationally and donations to
PANDAS Network—simply a website at that time---began to come in; therefore, a nonprofit legal status was formed. We have formed a wonderful board of directors all of whom are parents whose children have been affected by this illness. Each year we hold a conference in a different part of the country to meet and discuss progress in the diagnosis and treatment. Our groups have written medical studies, conducted surveys, called legislators and been on many t.v. news shows all in hopes to awaken the need for early diagnosis and covered medical treatment.
The Growth of Advocacy and Impact on Families
For one decade the website has received a steady rate of 60-100 inquires per month. PANDAS Network has
approximately 12,000 families reporting a child believed to have PANDAS-PANS. Because we are 100% grassroots funded parents across the country and the world have set up other small nonprofits to raise awareness and monies for families in their regions (Midwest, Southwest, East Coast, Europe). Parents have impacted the media with over 100+ news stories on PANDAS around the world.
We are proud that our “network” has created a way for families to unite and support awareness and treatment. We continue to operate by volunteers, a shoe-string budget solely from donations by families, and a lot of prayer! We celebrate our happiness when children are healed; and we support each other in the face of adversity.
Nationwide – we have requested recognition of the illness every October 9th in over 30 states in the U.S. The State of Illinois recently passed a bill mandating insurance coverage but Blue Cross and other medical insurers are pushing back.
Support Groups– small cadres of parents have united across the U.S. to create monthly support groups and online-support-discussion groups.
Centers of Excellence—centers for treatment are small but dotted across the U.S. This consortium of doctors from leading hospitals across the nation who are treating our children are overwhelmed by cases—many have one year waiting lists and are sorely underfunded. Our research studies are currently too small for American Academy of Pediatrics recognition. We had thought that the national government or large research grants would come in and I could get out of my “advocacy work.” But, it has not happened. The illness that crosses over multi-disciplinary fields and the overlap of psychiatric symptoms together with neurological symptoms has doctors flummoxed. The children’s stories are heartbreaking. Children treated early get better. Children treated several years into the illness often, but not always, do not get better.
On a personal level, the impact of tending to a PANDAS child is equivalent to that of working with an Alzheimer’s patient. For me, personally, the impact of continuing this work has been detrimental to my finances and marriage – and that story is the same for many PANDAS families.