History of PANDAS/PANS and PANDAS Network
When was PANDAS discovered, and why was the PANDAS Network founded?
PANDAS/PANS is relatively new in the medical world. There are many misunderstandings when it comes to these conditions, which leads to misdiagnosis and stigma. We’re here to shed some light on the history of PANDAS disease and offer some background on the PANDAS Network, whose goal is to counteract bias and stigma surrounding PANDAS/PANS, raise awareness for children struggling with these life-altering conditions and fund PANDAS/PANS research.
PANDAS was identified in 1998 by Dr. Susan Swedo of the National Institute of Mental Health (NIMH). Dr. Swedo proposed diagnostic criteria for PANDAS in her 1998 study. In 2002, the first clinical study on PANDAS reported evidence of a “temporal association of group A streptococcal tonsillopharyngitis and abrupt onset of OCD in 12 children.”¹ Antibiotic treatment in all 12 children resulted in a prompt reduction in symptoms. Research for new PANDAS/PANS treatments is ongoing.
Researchers defined PANDAS after identifying children with sudden behavioral changes, rapid-onset OCD, tics and psychological disturbances following an infectious illness. The common feature was an active or recent infection with strep throat bacteria, also known as Group A streptococcus. Researchers also hypothesized that “the pathogenesis of PANDAS may be similar to that of Sydenham’s chorea.”²
PANS, the larger category that encompasses pediatric acute-onset neuropsychiatric syndromes, was described in 2010 to include cases of rapid-onset OCD, deterioration in eating, as well as a number of other behavioral changes and neurological symptoms that weren’t directly linked to strep infections but included other infectious or environmental triggers.
PANS definition was described by a consortium of researchers as they sought to further define the condition in 2010, and an expert opinion paper was published on the topic.
Professional consensus and the awareness community continued to grow. To address the needs of families, Stanford hosted the first national PANS conference in 2013, where they worked to create clear diagnostic guidelines.⁴ PANS now has specific diagnostic criteria for medical providers to follow.
Diana Pohlman founded PANDAS Network to share PANDAS resources with other parents after searching for answers to heal her son Garrett, age 7. He developed severe neurological, psychological and physical problems following a strep infection. While she found support from one Stanford psychiatrist, Dr. Margo Thienemann, Pohlman had to search for treatment for her son’s issues and a deeper understanding of the causative factors of PANDAS on her own. After going through it herself, she knew that getting a PANDAS diagnosis was an incredibly difficult process. She wanted to support other families, as well as fund PANDAS research and programs to help others in the future.
When Garrett began exhibiting symptoms, Pohlman sought answers from doctors at Stanford. None of the doctors understood why her son was experiencing this huge personality change after strep infections. So she began research at Stanford’s medical research facilities. “We didn’t have Google then,” Pohlman says.
Determined to find answers, Pohlman attempted to contact Dr. Swedo, the researcher who identified PANDAS in a 1998 study—but Pohlman was unsuccessful. Thankfully, she came across information about treating PANDAS symptoms with intravenous immune globulin (IVIG). She also found a doctor who offered the treatment, Dr. Miroslav Kovacevic.
Dr. Kovacevic had helped other children and offered IVIG and steroid and antibiotic treatment for Pohlman’s son. Even before the IVIG treatment was over, Garrett’s condition began improving. He continued to improve over the course of one year.
Pohlman contacted the NIMH to reach Dr. Swedo and contacted Dr. James Leckman at the psychiatry center at Yale Child Studies to tell them the treatment had worked. In 2008, she flew out to meet 10 other researchers and share her story. They offered to launch a study on IVIG. Pohlman agreed to help find more research participants.
She put up a website in 2009 asking other parents if their child had a similar experience. “There was no Facebook; there was no Google. I just put up a little tiny page of some of the research, and I said, ‘Email me if you have any questions or if you think you felt like this happened to you.’ I thought no one would see it…within about 10 hours, there were three people. Within a month, 100 people,” says Pohlman. It grew by 100 parents each month thereafter.
She called each family, collected all the necessary data and presented it to Yale and the NIMH. The researchers began a multi-million dollar study on IVIG treatment for children with PANDAS.
While 1,500 people had applied for the IVIG study, researchers had to reject many of them due to the duration of their illness. “We found, sadly, that most of them had been sick for too long [to qualify],” says Pohlman. They eventually narrowed it down to 34 children to participate in the IVIG study. Thus advocacy and support became extremely important for the families of children excluded from the study.
The treatment had alleviated a lot of her son’s symptoms. But Pohlman became “doubly concerned” in 2012 when her younger daughter got strep. Following the infection, Pohlman’s daughter changed overnight and also became ill with PANDAS.
As the need for awareness and advocacy grew, Pohlman created the PANDAS Network non-profit in 2013 to support families of children with PANDAS/PANS. She also cooperated with the founders of the PANDAS Physicians’ Network, a portal for medical professionals created in 2014.
Pohlman has stressed how crucial parent donations have been to the PANDAS Network and its ability to help fund research, raise awareness and support other families affected by PANDAS/PANS. In fact, parents are the ones who funded MRI research showing inflammation of the blood–brain barrier and basal ganglia during infection. They have also funded genetic, autoimmune cell identification and other projects that have helped establish breakthroughs. These breakthroughs couldn’t have been possible without support and donations from parents. In Pohlman’s words, “The parents did it”—they have succeeded in supporting new discoveries in PANS/PANDAS research and provided other parents with education and hope.
Today, PANDAS Network holds an annual conference to discuss progress in diagnosing and treating PANDAS/PANS. PANDAS Network and associates have called legislators, conducted medical studies and appeared on media networks to bring awareness to the need for early diagnosis and treatment coverage.
Pohlman and PANDAS Network’s associates hope that the newest research will bring more answers for PANDAS families as we look to the future. Recently, both Columbia University and Yale University researchers reported breakthroughs that further our understanding of PANDAS. Columbia’s research explains how strep can cause inflammation to the blood–brain barrier, while Yale published research on certain misdirected autoimmune antibodies found on PANDAS childrens’ brains in the basal ganglia region, which could lead to more treatments.
Pohlman says that “the next frontier” is to expand the cohort to more families, create more treatment studies on IVIG and discover how to heal these children permanently, as well as find out why some children heal quickly and others less quickly. Christy Jagdfeld, PANDAS Network treasurer and parent, says that the roadmap for building more awareness and treatment is in place.
Their next goal is to expand their scientific advisory board and share all of the newest research on PANDAS with the public. When parents have this information, they can advocate for children with PANDAS in their communities and participate in state hearings, says Jagdfeld. Government agencies also need to know the history of PANDAS and the science behind these treatments to craft legislation that helps these children and supports medical coverage for them.
Jagdfeld says, “The science is there. We just have to get the knowledge out there and find better, quicker ways to diagnose and [prevent chronic cases].”
Click the link to learn more about PANDAS and PANS. If you’re looking for additional resources and community support, join the PANDAS Network support group as a family or treating professional member.