An often-overlooked disorder affects thousands of Texas children each year

By DR. SELENA SEABROOKS

The Dallas Examiner

Approximately 1% to 2% of the pediatric population is affected by Pediatric Acute-onset Neuropsychiatric Syndrome. In Texas, that about 11,000 children under the age of 18 that develop this condition each year.

PANS – a condition often overlooked in children – is a clinical condition defined by the sudden “encephalitic-like” onset of obsessive-compulsive symptoms and/or severe eating restrictions, along with at least two concurrent cognitive, behavioral or neurological symptoms.

Recently, the Office of Disability Prevention for Children of the Texas Health and Human Services hosted an informative webinar discussing Pediatric Acute-onset Neuropsychiatric Syndrome. The webinar covered the causes of PANS and the importance of early identification and diagnosis of the syndrome. Dr. Qazi Javed, a PANS advisory council member, presented.

The host, HHSC Program Manager Jay Smith, opened by discussing the difference between PANS and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal. He explained that PANS has no age requirement and can be caused by any infectious trigger, sometimes even non-infectious triggers. While PANDAS, on the other hand, the first episode occurs between the age of 3 and puberty, and there is a history of Group A Streptococcal infection. However, both PANS and PANDAS tend to have an acute onset of ODC, tics, and/or restrictive eating behavior.

“The peak age of onset is 6.5 years of age. Boys diagnosed with PANS outnumber girls approximately two to one. Children diagnosed with PANS or PANDAS are typically between 1 and 13 years of age, but cases have been observed in older adolescents. Sixty percent of diagnoses occur in children between the ages of four and nine,” Smith said.

Symptoms of PANS

Smith explained that the severity of the symptoms could vary and can relapse and remit. Symptoms can also change during and between flares.

PANS symptoms include:

• anxiety
• emotional lability and/or depression
• irritability
• aggression
• and/or severe oppositional behaviors, such as:

– behavioral (developmental) regression

– sudden deterioration in school performance

– motor or sensory abnormalities

– somatic signs and symptoms

Treating PANS

Javed explained that the first step is to complete a comprehensive diagnostic evaluation to establish PANS as the correct diagnosis. Followed by symptomatic relief with psychiatric medications and behavioral interventions, prioritizing treatment of symptoms causing the most significant distress and disruption. The next step would include treating symptoms resulting from neuroinflammation or post-infectious autoimmunity with anti-inflammatory or immunomodulatory therapies. Last, the effectiveness of the treatment should be evaluated and necessary modifications should be made, as warranted by the improvement or worsening of symptoms.

“This is not a disorder in which we go once things are okay. If that happens, that’s amazing. There’s nothing better than that. But if it does not happen, then we have to continue following up. We follow the process,” Javed explained.

Challenges with PANS

“Diagnosis is a problem. There isn’t enough sophisticated ways that we have of diagnosing it. The interdisciplinary nature of the illness itself causes a problem with, no longer with diagnosis, but with treatment as well. There are no protocols right now that are very well researched,” Javed said.

Javed referred to an unpublished survey conducted by Moleculera Labs in 2018. The survey found that on average, patients saw 12 medical providers before being diagnosed, resulting in approximately three years of the patient going undiagnosed. Also, the survey found that at least 20% of patients with PANS and/or PANDAS experienced a delay of more than 12 months before receiving appropriate treatment, even after being diagnosed.

Impact of PANS

PANS can affect the daily living activities of the child. Those activities include community and family social participation; higher-level thinking, attention, memory and sequencing; emotional coping; and energy and drive.

“There’s not only the child that is affected. Social structures are affected. A child’s interaction with school, with family, with friends. There are medical system challenges. People can sometimes become distrustful of medical practitioners, so they don’t go to them with problems anymore. They seek help somewhere else,” Javed expressed.

Other impacts include caregiver burdens – difficulty understanding PANS, poor family functioning and financial struggles.

Javed also discussed the consideration of appropriate school accommodations, which included accommodations for separation anxiety and OCD symptoms, like allowing parents to be in or near the classroom; providing frequent bathroom breaks for those with urinary problems; providing extra time for assignments or earbuds for distractions for children exhibiting ADHD-like behaviors; and shortening the school day with a reduced academic load for those experiencing poor cognitive stamina.

As the presentation came to a close, several helpful organizations with resources were presented including the Alliance to Solve PANS and Immune-Related Encephalopathies, the New England PANS/PANDAS Association and the PANS Advisory Council.

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