PANS, PANDAS, and Pediatric Neuroinflammatory Conditions

I am licensed to care for children who live in North Carolina only. I typically evaluate children and adolescents between the ages of 4 and 19, with rare exceptions for young adults up to age 21.

Provider directories can be found at The Neuroimmune Foundation, the PANDAS Physician Network, and ASPIRE. These directories are provided for reference and are not an endorsement of any practitioner listed. 

In addition to the wealth of information with the organizations above, additional resources can be found at The Alex Manfull Fund and at the Pace Foundation. 

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. Unlike PANDAS, PANS may be associated with a variety of infectious or non-infectious triggers.

It is characterized by abrupt onset of OCD and/or restrictive food intake as well as 2 or more of the following: anxiety; emotional lability; depression; irritability; aggression; severely oppositional behaviors; behavioral or developmental regression; decline in school performance, handwriting, or previously acquired academic skills; sensory abnormalities; sleep disturbances; enuresis (involuntary urination); urinary frequency.

PANDAS is the acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections and is defined by the abrupt onset of OCD and/or tics following a Group A Streptococcus infection. Symptoms typically begin between ages 3 and puberty, although presentations outside this range can occur. PANDAS tends to have a relapsing-remitting course, and long-term management is frequently required.  PANDAS is included under the umbrella of  PANS.

A PANS or PANDAS diagnosis is primarily clinical and is based on the child’s history, symptoms, and physical examination. Laboratory testing and imaging may help support the diagnosis or evaluate for other conditions but are not, by themselves, diagnostic. It is vital to make an accurate diagnosis because other conditions may require different management.

Sudden changes in behavior, anxiety, OCD symptoms, or school functioning can have many possible causes. A careful evaluation is important to consider not only PANS/PANDAS but also other medical, developmental, psychiatric, and environmental contributors.

Management of PANS and PANDAS is individualized and often involves several complementary approaches:

• Identifying and treating potential infectious triggers when appropriate
• Supporting the child’s emotional and behavioral health with evidence-based therapies such as CBT, ERP, SPACE, and other appropriate interventions
• Addressing immune and inflammatory contributors when clinically indicated, which may include anti-inflammatory therapies, steroids, or other immune-modulating treatments

Many children improve significantly with appropriate evaluation and treatment, although the course varies considerably from child to child. Some experience complete resolution of symptoms, while others require ongoing management. My goal is to understand each child's unique situation and develop an individualized plan that supports the best possible outcome.

IVIG is a treatment option that may be considered for select patients with significant immune-mediated illness when clinically appropriate. When IVIG is indicated, I help families navigate appropriate treatment pathways, which may include coordination with specialty infusion providers.

The Neuroimmune Foundation is an excellent non-profit that advocates on behalf of individuals with neuroimmune and inflammatory brain conditions.  They have many resources for families as well as for clinicians wanting to learn more about the treatment of these conditions.