PANDAS is a Bear

Parents unite in a Richmond-based nonprofit to shine a light on a little-understood condition that can lead to sudden-onset neuropsychiatric symptoms in children

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The nightmare was as much a puzzle for his parents as it was scary for Tyler.

He was waking up in a state of terror, saying he would not be able to go to college, not because of his grades, but that he would be unable to drive there, because he couldn’t pass the driving test.

The thoughts were disturbing, oddly compulsive, and especially puzzling, given that Tyler was just 5.

“That’s when I knew something was wrong,” says his mother, Chester resident LaDonna Branson.

But putting the pieces of the puzzle together proved to be a long, frustrating process.

It took three years and working with seven doctors before Tyler received a diagnosis that made sense: PANDAS, or pediatric autoimmune neuropsychiatric disorder associated with strep.

PANDAS refers to a condition in which symptoms of obsessive compulsive disorder or movement or vocal tics come on suddenly after a strep infection. Other symptoms may include anxiety, moodiness, and aggression toward family members. The strep is thought to trigger an immune system response resulting in an inflammation of the brain.

A child may be completely normal one day, and in the next day or so may seem like a completely different person, says Wei Zhao, an allergy and immunology specialist at the Children’s Hospital of Richmond at VCU, has been seeing this type of patient for three years. He notes that it is a complicated condition and may require services of professionals from multiple disciplines; allergists and immunologists, neurologists, psychiatric and behavior specialists and infectious disease specialists.

There is a related condition with the acronym PANS, which stands for pediatric acute-onset neuropsychiatric syndrome, that refers to all cases, not just those associated with strep.

Zhao notes that many of the children began to fixate in their thinking, such as that the house is not secure and that doors, and windows have to be checked before going to bed. Anxiety also takes its toll on these children, with fears such as going to school, or separation from their parents. They may become aggressive around family members, regress in toilet training and begin to wet the bed; school work deteriorates and handwriting may become unrecognizable.

Many develop verbal tics like making an odd noise, or mechanical tics like odd movements.

The condition was first noted as associated with strep, but there can be other triggers such as a mycoplasma infection to set off the immune response and cause the inflammation. Antibiotics are a first choice to head it off, says Zhao, by taking care of the bacteria before it can trigger the immune response.

Some patients are treated through a process known as IVIG, in which immunoglobulin is administered intravenously. Another treatment option may be plasmapheresis, in which some of the patient’s blood is removed, cleaned and replaced over several treatments. You can learn more about treatments here.

Tyler and his parents had dealt with his fear, anxiety, aggression, obsessive-compulsive behaviors and movement and vocal tics, all symptoms of children with PANDAS.

Her husband, Derrick, was deployed at the time, and she thought that may be a contributing factor, but Tyler’s condition continued to deteriorate.

What tied it together was that he had had multiple cases of strep, says his mom.

“It just seemed like something he constantly got,” she says.

Along the way, he was medicated, sent to counselors, and his mom received several suggestions on what might be going on, but they just didn’t fit the whole situation.

“From five to now, it’s been a journey,” says his mom.

Tyler, who is now almost 11, has responded well to treatments including plasma exchange and to low-dose IVIG.

“We’re doing really good and we’re hoping we’re on the road to recovery” says Branson.

With a diagnosis in hand, Branson began to wonder how many mothers were in a similar, situation, feeling alone in the face of an unknown affliction in their child. She reached out, and through Facebook, found Jessica Gavin, a Richmond mother whose son was 4 when he received a PANDAS diagnosis.

Now, the moms are working together in PRAI, the PANS Research and Advocacy Initiative. The nonprofit promotes awareness of PANDAS and PANS, advocates for the children and their families and invests in research and education. Gavin is president and founder of the group and Branson serves as vice president.

On March 23, the group will present a showing of a documentary, “My Kid is Not Crazy,” from Tim Sorel of the University of Florida in Gainesville.

The film focuses on six families and how they’re coping with the condition, and dealing with the medical system and insurance hassles. Tickets to the screening at the Grace Street Theater sold out in four hours.

PRAI, which started in December 2015 with about 20 families, now has about 120 members from about 70 families, says Gina Pomering, a Midlothian resident and the director of media and events for the nonprofit. Pomering is also the mother of a child, Dominic, who was diagnosed with the condition in 2013 after multiple cases of strep.

It took several years of dealing with an array of symptoms such as a sudden onset of fear and changes in personality such as increased aggression, rage and emotional instability and obsessive-compulsive behaviors.

“We fought to get him help, but there was very little known about the disease at the time,” according to his mother.

Her mother had read a newspaper article about PANDAS and felt that her grandson had classic symptoms, she in turn called a doctor in metro Washington and that led to a diagnosis.

Dominic is 9 now. He’s gone through the immunoglobulin procedure and has improved, though he had another bout of strep earlier this year, the first time in three years, says his mother.

Awareness is building about the condition, but before Dominic was diagnosed, his mother says, workers at the school suggested that he was suffering from early-onset bipolar disorder. He’s now in a different school, Northstar Academy, and he’s thriving.

“The result is probably the best we could ask for, because he’s where he should be,” says his mother.

Zhao now sees about 40 patients with PANDAS or PANS, including, recently one from Tennessee. There’s more acceptance now, but the concept of PANS AND PANDAS is not universally accepted in medicine, Zhao notes.

Zhao notes that insurance coverage can be problematic for treatment of these children, because of the controversy and because it crosses so many disciplines. The behavioral issues may be hard to distinguish from other conditions. Certain tests may be approved, while other procedures may be denied.

There’s also a need for continued research.

“We still need to rule out if there is (some) other disease going on,” he says. “More research is needed in this field in order for people to have a better understanding of this condition.”

The Richmond nonprofit has a $1.5 million fundraising goal for research and has raised about $10,000. A fundraiser will be held at 2 p.m. on April 23 at Blue Mountain Brewery in Afton.

HEALTHY DEVELOPMENTS

Health and medicine news in brief

Two Richmond cancer treatment centers now have an international partner and new names. The HCA Virginia facilities are now the Sarah Cannon Cancer Institute at Henrico Doctors’ and the Sarah Cannon Cancer Institute at Johnston-Willis, according to a release. The names reflect the collaboration with Sarah Cannon, the Cancer Institute of HCA.

The Central Virginia chapter of JDRF, a nonprofit that supports Type 1 diabetes research, raised more than $825,000 in its annual gala, held Feb. 18 at the Jefferson Hotel. About 420 guests attended the black tie event, “A Magical Night For a Cure.”