NIMH Blog: From Paresis to PANDAS & PANS

For the original article, please see NIMH.

Director’s Blog
March 26, 2012

From Paresis to PANDAS & PANS

Thomas Insel

In a visit to a mental asylum in 1912 you would have seen many patients with “general paresis.” The word “paresis” is Latin for weakness. General paresis was a form of psychosis with delusions, hallucinations, and memory problems often of rapid onset and thought to be due to a general constitutional weakness. At least that was the explanation until 1913, when general paresis was shown to be caused by syphilitic infection of the brain. The first treatments were awarded a Nobel Prize in 1917. The advent of antibiotics 30 years later led to the virtual eradication of neuro-syphilis, as the disorder came to be called, in this country.

The idea that mental or behavioral disorders could be due to infection is, therefore, not new but it remains surprisingly difficult to accept. When I was in training in the 1970’s, peptic ulcer disease was the prototype of a “biopsychosocial” disorder, with stress and a Type A personality considered the causes and psychodynamic therapy recommended as the treatment. Although helicobacter pylori was identified as the cause of peptic ulcer disease by Australians Robin Warren and Barry Marshall in the 1980’s, there was very little awareness (within the mental health community) that the disorder could be cured with antibiotics until Warren and Marshall received the Nobel Prize in 2005.

We may be looking at a similar reluctance to accept an infectious cause of pediatric sudden onset obsessive compulsive disorder (OCD) – in a debate that has been ongoing for almost two decades. In the early l990s, pediatrician Dr. Susan Swedo identified a subgroup of children whose OCD symptom onset didn’t fit the typical pattern. Instead of emerging gradually over weeks or months, they experienced ferocious bouts of compulsive behaviors and other symptoms “overnight and out of the blue.” As a pediatrician, Swedo’s familiarity with the ways of infectious agents and autoimmune mechanisms, together with her careful observations in the child psychiatry clinic of the NIMH Intramural Research Program, sparked the surprising hypothesis that a strep infection could trigger OCD symptoms via an autoimmune process.

This proved more complicated than syphilis or helicobacter. Part of the problem has been that strep is very common in childhood, making it methodologically difficult to prove a causal connection between the microbe and the OCD symptoms. The onset has not always been linked precisely with a strep infection and the critical increase in antibodies to strep has not been evident consistently. Nevertheless, immune-based treatments have proven successful, leading to the growing acceptance of the concept of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS).

Fortunately, the field is moving toward consensus on some of the larger issues, such as a broader concept of “acute and dramatic” onset of the same profile of psychiatric symptoms identified in PANDAS – but of unknown cause. There is also consensus on the need to establish a centralized registry to facilitate data analysis, so that causes and appropriate treatments can eventually be pinpointed.

This rapprochement recently took form in criteria for a broadened syndrome of acute onset OCD, published last month by Swedo, James Leckman at Yale and Joel Rose at Johns Hopkins. Their proposed Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) builds on and subsumes PANDAS. It embraces youth who experience acute onset of OCD or anorexia symptoms, mixed with a varying profile of other neuropsychiatric symptoms – cause unspecified.

Meanwhile, to strengthen evidence in support of immune-based treatment for the subset of youth whose illness is strep-related, Swedo, Leckman, and Madeleine Cunningham of the University of Oklahoma, and colleagues, are collaborating on a multi-site, double blind,placebo-controlled trial. It is testing intravenous immunoglobulin (IVIG) for OCD symptoms in PANDAS. IVIG, an infusion of normal antibodies, restores normal immune function by neutralizing errant antibodies. A similar pilot study testing IVIG and another immune-based treatment more than a decade ago found that all treated children with PANDAS improved, with more than half completely cured or experiencing only subclinical symptoms after one year.

Despite doubt in some quarters, hints of possible involvement of infectious agents and/or autoimmune processes in other serious brain disorders, such as autism, have spurred interest in PANDAS as a model for a type of illness process that may be more informative than widely assumed.

MRI scans of a PANDAS patient
MRI scans of a PANDAS patient, showing reduced inflammation in the caudate nucleus(area circled just to the left of black area in center of brain), part of the basal ganglia, following IVIG treatment. Evidence suggests that this brain structure is targeted by errant anti-brain antibodies, triggered by a strep infection, in PANDAS.


Swedo, SE, Leckman JF, Rose, NR. From Research Subgroup to Clinical Syndrome: Modifying the PANDAS criteria to describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Feb 2012, Pediatrics & Therapeutics.

Cuts to Mental Health Services


Governor Corbett’s proposed budget for the 2012-13 fiscal year includes devastating cuts to community mental health programs.  It is imperative that you contact your “State” Representative and Senator and urge them to restore these harmful cuts.  Let them know that persons with mental illness rely on these services to help them remain in the community, and avoid institutional settings.  We also suggest that NAMI Affiliate Presidents meet with their area state legislators in their district offices (see tips for meetings).  
The Governor’s budget proposes consolidating 7 programs (including community mental health services and the Behavioral Health Services Initiative) into a single, “flexible” Human Services Block Grant for counties and then slashes funding by 20%.  In addition to the 20% cut in funding, there is no guarantee that the block grant funds will be used to provide mental health services.  Legislators must vote on the Governor’s proposed budget.  
One of DPW’s initiatives is to reduce the number of people living in institutions and when appropriate, place them in less costly, community settings.  We applaud these efforts.  However, it is critical that legislators restore funding for community mental health services, or individuals may end up back in institutional settings, including state hospitals, inpatient psychiatric facilities or state prisons.  The proposed budget cuts jeopardize the lives of those who rely on community mental health services. 
This is a very difficult budget year and it is extremely important that you contact your legislators, tell them why community mental health services are important to you and ask them to oppose the proposed cuts.
The budget issues will remain active until the budget is passed by your state Representatives and Senators (usually around June 30th).  The following actions are suggested to help have an impact on changing the Governor’s recommendations for cuts to community mental health programs.

We have provided a Sample Letter which will help you to tell your story and the impact these cuts may have on your family. Personal stories are important and are a way to help illustrate for legislators and the Governor, the importance of the services targeted for cuts. For NAMI PA Affiliates and others, we have also provided an outline for requesting a meeting in local offices of local state elected officials. These meetings, are an important part of the total strategy for helping legislators to better understand the impact of the Governor’s proposed cuts. 
Please open the above link to access the NAMI PA website and the resources listed below.  If you cannot open directly through link than simply go to and click on the “Call to Action” at the top of the page!  Thank You!
Talking Points        Sample Letter        Steps for Legislator Meetings
List of the Types of Services Impacted by Cuts        Overview of the Proposed Budget
Find your Legislator        OMHSAS budget      Governor’s budget

Take A Stand Against Budget Cuts!

Write, Email, Phone – Time to Get in Touch with Legislators!
It is crucial that the work being done in Harrisburg be accompanied by grass roots legislative work in the districts! Legislators are very interested in hearing from constituents, including providers, consumers, and families. It is important that they continue to be reminded by every means possible of the importance of maintaining access to behavioral health, intellectual disability, and autism services. While the most effective means of outreach continues to be inviting legislators to tour agencies or visiting them accompanied by families or consumers, in the all out budget assault that providers are currently experiencing, other methods of outreach need to be employed as well. 
Legislators’ email addresses, mail addresses, and phone numbers can be found on PCPA has developed sample language that can be used in letters or emails and budget talking points to assist in delivering the message. However, this suggested language is only part of what should be included – most important is information about how your agency serves those in the community, especially success stories if possible. The following materials may help agencies reach out to legislators through letters, phone calls, and emails. 

These cuts target the truly needy and will hurt individuals who should not be sacrificed during this time of limited resources, but should be among the first protected. If services to Pennsylvanians in need of mental health, intellectual disability, autism, or addiction care are to remain accessible and effective, funding must be preserved and Pennsylvania’s safety net must be protected. To avoid the devastation of Pennsylvania’s community services, it is crucially important that members take action NOW! 


Copyright 2012 – Pennsylvania Community Providers Association
2101 N Front St, Bldg 3, Ste 200, Harrisburg, PA 17110
Phone: 717-364-3280 – Fax: 717-364-3287

Tell Governor Corbett “NO MORE CUTS!”

no more cutsTell Governor Corbett “NO MORE CUTS!”
Governor Corbett Plans to Cut 20% in the Department of Public Welfare Budget
There are approximately 55,000 individuals who receive intellectual disability services in their homes and in their communities in Pennsylvania.14,852 receive services through the state-only dollars called “base funding” which is in serious jeopardy due to Governor Corbett’s proposed budget.There are another 15,779 individuals on the Waiting List to receive these services, including over 3,000 with emergency needs (aging caregivers, high risk situations) as well as 700 young men and women with an intellectual disability who will graduate from school this year….with no place to go.PAR (Pennsylvania Advocacy and Resources) represents the majority of intellectual disability services and supports around the state. Within their membership, they employ 31,000 people. Because of midyear cuts to the rates providers are paid, on top of other changes in how services are funded, they are aware of at least 490 jobs that have been lost since last July and they are anticipating more.
WHAT YOU CAN DO: Please call, email or write Governor Corbett and express your concern over his proposed 20% budget cut.
Phone: 717-787-2500
Address: 225 Main Capital Building, Harrisburg PA 17120
Dispel the myths by telling your own story about people you serve.
Print a petition and make sure to have your signers include their address.
Contact your legislators, you can find them here:
More information is available to you at this Facebook link:
Together, with a single voice, we can make a positive difference in Harrisburg.

Employee Bio – Theresa Schrig

Theresa Schrig is the Behavior Health Coordinator for the Health Care Quality Unit at the Advocacy Alliance. She has recently celebrated her eleventh year with us.

Her position is to provide behavior supports to the community in the form of education for individuals that support people with intellectual disabilities.

ADHD Parent Support Group

ADHD Parent Support Group Flyer
PA Families Inc
431 Dever Hollow Road
Templeton, PA 16259

PFI: The diverse Statewide Family Network that empowers PA families through support and education with a Unified Voice.
PFI is funded by SAMHSA the Substance Abuse Mental Health Services Administration. The views and opinions contained in the publication do not necessarily reflect those of SAMHSA or the US Department of Health and Human Services, and should not be construed as such.
PFI’s primary function is to be an information and referral resource for residents of Pennsylvania who have children with special needs.   PFI does not endorse any one agency, group, organization, service or program.

Event: Widener University Employment Fair

Widener University
Staff from our HCQU Hershey Department will be participating in the Widener University Employment Fair on April 20, 2012. It is for individuals with intellectual and developmental disabilities that are transitioning from school to work. HCQU nurses will be conducting blood pressure checks and focusing on topics regarding healthy nutrition and preventing lifelong diseases. There will be magazines from Giant Food Stores and a healthy snack to give away as well as many handouts on wellness, health screenings, stress management as well as ways to eat healthy on a budget. HCQU staff is excited and looks forward to this event.

Sharing Life

Sharing Life is small group of committed individuals who identified the need for re-engagement opportunities for persons in the community who have been discharged from a State Hospital. Sharing Life offers monthly lunches with live entertainment and educational initiatives. These events are community based and everyone is welcome. There are no requirements or restrictions and attendees do not need to have been served at a State facility.

Sharing Life hopes that individuals attending these events will find acceptance back into their community as well as purpose. A goal of Sharing Life is to become a self-sustaining initiative where individuals, community members, churches and merchants join the planning and operating of events while sustaining its future.

Members donate time and money; prepare, cook and serve the lunches; and purchase Bingo prizes. Sharing Life has received considerable monetary support and donations from St. Mark’s Church and its parishioners.

Sharing Life has just completed its first fundraising event with the support from individuals with lived experiences. 150 Wixon’s Famous Shoo Fly Pies were sold, raising $480.

Future plans entail, presenting the I’m The Evidence Campaign in April and conducting additional fundraisers.

Sharing Life always welcomes folks to sign up as Ambassadors for this campaign. If interested please contact:

Connie J. Hammann

The Advocacy Alliance

External Advocate Project Manager

Mental Health Advocate Community Transition



HCQU In Action

HCQU Blog:
On February 15, 2012, I went to visit an individual with intellectual/developmental disabilities who lives independently, to teach the importance of diabetes and healthy nutrition. This individual, who is diabetic, was skipping breakfast and lunch and having issues with low blood sugar levels. After educating this individual on the importance of eating regularly to keep their blood sugar levels stable, they contacted me on February 28, 2012 to report they were receiving a regular lunch delivery. They had spoken to some of the other residents about the training and received the name of a church that provides nutritious lunches every day to their particular apartment complex. I praised this individual for their efforts.
Lisa Miranda, LPN, BSE
The Advocacy Alliance Heath Care Quality Unit
1512 E. Caracas Avenue
Hershey, PA 17033