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The Great Pretender

Shedding Light on PANDAS––Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal



Joan McCullough and daughter Cory are still active in the PANDAS support group, though Cory made a full recovery

Photo by Stan Godlewski

Daniel* was upbeat and easy going, the kind of kid people gravitated to. When he was five, that abruptly changed. 

Daniel began hissing and grunting. He spent his days staring at the floor, unwilling to look at his parents. He needed to know where they were at all times, but wouldn’t let them touch him. He hoarded food scraps, yet refused to eat anything his mother touched. Then the hallucinations began, bringing his parents to their knees. Two years into an odyssey that erupted out of the blue, Daniel was diagnosed with PANDAS. 

PANDAS is swift, fierce, and unpredictable. An acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, the syndrome occurs when a misdirected immune response triggered by Streptococcal-A, or simply “strep,” goes awry. Rather than just attacking the germ, it also attacks the brain, leading to autoimmune disease.

Overnight, a child begins to exhibit one or more symptoms, such as obsessive-compulsive disorder, extreme anxiety or rage, hallucinations, verbal or physical tics, anorexia or food aversion, personality disorders, heightened sensory sensitivities, separation anxiety, sleep disturbances, frequent urination, regression, learning issues, and depression. Symptoms typically reach full-scale intensity within 24 to 48 hours, according to the National Institute for Mental Health.

PANDAS is subset of a larger class of disorders called Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS. Although strep remains the main trigger, Lyme, chickenpox, herpes simplex, walking pneumonia, and environmental factors also cause PANS. Together, these conditions affect an estimated one in 200 children between the ages of three and puberty.

Obtaining a correct diagnosis can be challenging, according to Gabriella True, co-founder of the New England PANS/PANDAS Association. “The medical community is not well versed in these conditions and many pediatricians mistake them for psychiatric illnesses.” Too often, children are treated with psychotropic drugs rather than the anti-infective or immune therapy they need. 

“Why PANS/PANDAS isn’t more recognized by pediatricians is perplexing,” says Dr. Darin Ingels, ND at Ingels Family Health in Fairfield, who has treated more than 100 PANS/PANDAS patients. “When a child that’s normal and healthy starts having all these problems they’ve never had before—literally within a day—it’s striking. Other infections typically have slower onsets; PANS happens very quickly.”

Further complicating things, not all patients test positive for strep. “Strep may have a high false-negative rate, so you have to do a culture, not just a rapid strep test,” explains Dr. Nancy O’Hara, a leading expert on PANS/PANDAS at the Center for Integrative Health in Wilton. 

A child may be treated with antibiotics for another infection, but not tested for strep. When she develops separation anxiety, tics, OCD six to12 weeks later, nobody traces it back to strep, O’Hara explains.

Children with PANS/PANDAS may display behaviors seen in autism and be diagnosed accordingly. “My daughter, Eve, was born a healthy, normally functioning child,” says Fairfield resident, Elizabeth. When the toddler was two-and-a-half, she lost the ability to speak, communicate, and socialize. Just before her third birthday, Eve was diagnosed with autism. 

“Eve suddenly lost interest in people. She became very anxious and went from walking happily into her nanny’s arms to screaming the house down when I’d leave the room,” Elizabeth remembers. “She also had severe sensitivity to touch, sunlight, or loud noise.”

Over time, her skills would improve, only to disappear again. “The typical thing the doctors will tell you is, ‘That’s autism for you; we don’t know why they do that,’” says Elizabeth.

When Eve was four, her doctor ordered a blood test and discovered she was riddled with viruses. “He asked if she ever had strep infections,” Elizabeth says, “but Eve never complained of a sore throat, so we assumed she didn’t.” 

Eve started seeing Dr. O’Hara and went on antibiotics last June. In less than 48 hours, she began communicating again. “She’s still behind,” according to Elizabeth. “But she’s gone from barely functioning to using her language appropriately, showing interest in other children, and being calmer. Her anxiety disappeared completely.” 

Joan McCullough co-runs a support group for Fairfield County parents and her daughter Cory recovered from her own bout with PANDAS. About 25 parents participate in the group, but she believes the condition is more widespread. “There are four boys on one street alone that ride the same bus and all ended up with PANDAS,” she says.

Her advice? Seek a second opinion if told to see a psychiatrist. “You know your child best, so listen to your instincts. Don’t give up hope—there’s light at the end of the tunnel.” 

*Names have been changed to respect the children’s privacy.


Some Resources

PANDAS Physicians Network

New England PANS/PANDAS Association

PANDAS Network  

PANDAS/PANS Advocacy & Support  

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Cost: $50-$360

Where:
Waveny Park
70 Pine St.
New Canaan, CT  06840
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An irreverent, fast-paced romp through the Bard’s plays, The Complete Works of William Shakespeare (abridged) was London’s longest-running comedy having clocked a very palpable nine...

Cost: Free Admission

Where:
Christine's Garden
151 Main Street
New Canaan, CT  06840
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Join Grace Farms Foundation for an inspired conversation about how religion is portrayed in the media today. Journalists Wajahat Ali (New York Times and CNN contributor) and Michelle Boorstein (The...

Cost: Free

Where:
Grace Farms
365 Lukes Wood Road
New Canaan, CT  06897
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Sponsor: Grace Farms Foundation
Telephone: 203-920-1702
Contact Name: Regan Hayes
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Corteo, one of Cirque du Soleil’s most successful shows on record, comes to Webster Bank Arena in Bridgeport for seven shows from July 18-22, 2018. Corteo, which means cortege in Italian, is...

Cost: Starting at $52

Where:
Webster Bank Arena (Bridgeport)
, CT


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Nature is on display in “A Reverence For Nature” with pieces that reflect the artists’ admiration of nature or the environment in a multitude of ways. Exhibiting artists include...

Cost: Free

Where:
Maritime Garage Gallery
11 North Water Street
Norwalk, CT  06854
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Sponsor: Norwalk Parking Authority
Telephone: 203-831-9063
Contact Name: Nadia Martinez
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Garden Menagerie Exhibition on view through August 25, 2018 during regular library hours Garden Menagerie, features a variety of works by Alex Sax and a selection of nineteenth-century books...

Cost: Free and open to the public.

Where:
Pequot Library
720 Pequot Avenue
Southport, CT  06890
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Sponsor: Pequot Library
Telephone: 120-325-9034615
Contact Name: Tracy Steneken
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The Bruce Museum spotlights the creative energy and vitality of fine art created by regional high school students in the 8th annual iCreate exhibition. Opening on June 9 and continuing...

Cost: Adults $10; Students and Seniors $8; Members and Children Under 5 Free

Where:
Bruce Museum
1 Museum Dr
Greenwich, CT  06830
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Telephone: 203.413.6735
Contact Name: Scott Smith
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Heather Gaudio Fine Artis pleased to present “Burn Baby Burn”, a group exhibition featuring works by Kathleen Kucka, Dennis...

Cost: Free

Where:
Heather Gaudio Fine Art
66 Elm Street
New Canaan, CT  06840
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Sponsor: Heather Gaudio Fine Art
Telephone: (203)801-9590
Contact Name: Rachael Palacios
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Fairfield Sidewalk Sale & Street Fair Saturday, July 21, 2018 10:00am-4:00pm, Rain or Shine First Selectman Mike Tetreau announced today that the Town of Fairfield and Fairfield...

Cost: free

Where:
Downtown Fairfield
Post Road
Fairfield, CT  06824
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Sponsor: Town of Fairfield & Chamber of Commerce
Telephone: 203-256-3120
Contact Name: Mark Barnhart
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A series of graphic novel-style panels designed by illustrator Kirk Manley tells the dramatic story of the spy ring that operated between New York City, Long Island, and Fairfield during the...

Cost: Members: Free; Adults: $5; Seniors & Students: $3; children 5 and under: Free.

Where:
Fairfield Museum
370 Beach Rd
Fairfield, CT  06824
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Mock Stock is going Metal in a nod to AC/DC, Guns N Roses, and Metallica.  Halfway to HELL (Tribute to AC/DC)- Halfway to HELL- AC/DC Tribute features a High energy stage show with two...

Cost: Tickets $20 in advance, $30 at the door.

Where:
Ives Concert Park
43 Lake Ave Ext
Danbury, CT  06811
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Sponsor: Ives Concert Park and Promotions in Motion
Telephone: 203-837-9227
Contact Name: Phyllis Cortese
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Lost In The Flood is a tribute to Bruce Springsteen & The E Street Band Frank Bergonzi - Vocals Dave "Hatch" Hadshinow - Keys Joe Tomasulo - Organ Mark "Maff" Maffei - Drums...

Cost: Free

Where:
Levitt Pavilion
40 Jesup Road
Westport, CT  06880
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On June 23, the Bruce Museum in Greenwich opens Expressionism in Print: The Early Works of Richard Haas, 1957 - 64 in the Arcade Gallery. The exhibition will be on display through October 21, 2018....

Cost: Free for members; $10 for non-members; $8 for seniors and students with ID

Where:
Bruce Museum
1 Museum Drive
Greenwich, CT  06830
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Telephone: 203-413-6735
Contact Name: Scott Smith
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The Magpie Salute brings together the reunited guitar team of Rich Robinson and Marc Ford from the Black Crowes, bassist Sven Pipien (also from the Crowes) along with lead...

Cost: $48

Where:
Fairfield Theatre Company in The Warehouse
70 Sanford Street
Fairfield, CT  06824
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Egotistical leading man, director, and producer Fred Graham is reunited with his ex-wife, Lilli Vanessi, when the two are forced to play opposite one another in a new production of...

Cost: $50-$360

Where:
Waveny Park
70 Pine St.
New Canaan, CT  06840
View map »


Website »

More information

An irreverent, fast-paced romp through the Bard’s plays, The Complete Works of William Shakespeare (abridged) was London’s longest-running comedy having clocked a very palpable nine...

Cost: Free Admission

Where:
Christine's Garden
151 Main Street
New Canaan, CT  06840
View map »


Website »

More information

Corteo, one of Cirque du Soleil’s most successful shows on record, comes to Webster Bank Arena in Bridgeport for seven shows from July 18-22, 2018. Corteo, which means cortege in Italian, is...

Cost: Starting at $52

Where:
Webster Bank Arena (Bridgeport)
, CT


Website »

More information

Garden Menagerie Exhibition on view through August 25, 2018 during regular library hours Garden Menagerie, features a variety of works by Alex Sax and a selection of nineteenth-century books...

Cost: Free and open to the public.

Where:
Pequot Library
720 Pequot Avenue
Southport, CT  06890
View map »


Sponsor: Pequot Library
Telephone: 120-325-9034615
Contact Name: Tracy Steneken
Website »

More information

Hiking and practicing yoga outside in the fresh air leaves you feeling uplifted, centered, and peaceful! In warm weather months, we meet regularly in various parks and trails. Each event starts...

Cost: Three and Five Class Packages (3 times for $33, 5 times for $42)

Where:
Vary with each class
, CT


Website »

More information

Heather Gaudio Fine Artis pleased to present “Burn Baby Burn”, a group exhibition featuring works by Kathleen Kucka, Dennis...

Cost: Free

Where:
Heather Gaudio Fine Art
66 Elm Street
New Canaan, CT  06840
View map »


Sponsor: Heather Gaudio Fine Art
Telephone: (203)801-9590
Contact Name: Rachael Palacios
Website »

More information

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