Mainstreams: Raising awareness for PANDAS

by Britt Aamodt

Contributing Writer

It’s a Wednesday night in Big Lake at the Friendly Buffalo. The bar and restaurant hums with midweek, after-work conversation. A ball game plays on the big screen TV.

But the real action is through the other door on the left, in the banquet hall, where lights are strung from the ceiling, platters of food are arranged on tables and a poster declares: “Welcome to the Minnesota PANDAS Support Group Awareness Day.”

Kirsten Tuckey, Elk River, mother of three, is bustling around, attending to last-minute details and showing guest speakers to their table.

“I’ve never done anything like this before,” Tuckey admitted.

Not only has she never presented at a conference, but she’s also never attended a PANDAS meeting of any sort. This is the first of its kind in Minnesota, and without Tuckey, her husband and their son Caiden, there wouldn’t be one this night, Oct. 9, either.

PANDAS is an acronym for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. If you’ve never heard of it, you’re not alone. Most people haven’t, which is why Tuckey and her fellow presenters knew they had to do something.

Plans for this session have been in the works for months.

The Tuckey family’s journey with PANDAS began in September 2010, during Caiden’s first week of kindergarten.

“Within a few days, we started seeing a transition in our child,” Tuckey said during her presentation.

In the audience were teachers, a school nurse, a Sherburne County administrator, friends and parents.

“Caiden’s hands started moving peculiarly,” Tuckey said and demonstrated what her family calls her son’s milking-cow hand gestures. “One morning, he came down for breakfast and it wasn’t exactly coughing but he was making this noise in his throat.”

The next morning he said he wouldn’t wear jeans – not just today, but never. He refused to go to school. He wouldn’t go to bed unless his mom or dad lay beside him, and then it would take hours for him to nod off. He cried at school.

The Tuckeys figured they were dealing with kindergarten jitters. This was just an adjustment problem, right?

But it turned out that what seemed like a behavioral issue was actually an autoimmune response caused by a streptococcal infection from the average strep A bacteria that’s the cause of so many sore throats and missed school days.

But with these children, their bodies responded to the infection by creating antigens to attack the bacteria, only to have the antigens turn rogue and attack the children’s brains.

Elizabeth Ann Eberhardt left Milwaukee at 7 a.m. and drove all day to make it to the Big Lake event. She was one of three presenters and the one who’s dealt with PANDAS longest.

Her son Daniel was diagnosed in 1998, and at the time, few in the medical community had heard of PANDAS or even believed the disorder existed.

“These kids do not present the normal signs of strep infection,” Eberhardt said. “That fuels skepticism and frustration.”

Added to that, the symptoms are different for every child, but tend to fall into broad categories like obsessive-compulsive behaviors, tics and separation anxiety.

To give the audience a feel for what it was like to live with PANDAS, Eberhardt re-enacted Daniel’s bedtime ritual, which would last upwards of two hours and involve foot washing and wiping of different parts of the face and bedclothes.

“Everything had to feel right and he was the only one who could say when it did,” she said.

Lisa Scholder is a clinical psychologist and the mother of three children with PANDAS. Her middle daughter, Rebecca, now 11, had her first PANDAS flare-up when she was 2.

It’s people like Scholder, Eberhardt and Tuckey — parents — who are leading the charge for awareness.

“We absolutely are the ones pushing this forward  because we’re the ones who care enough to do what has to be done and to stick with it,” Scholder said.

Eberhardt closed her presentation on a positive note. She showed a video of her 29-year-old son, now an award-winning Milwaukee fashion designer.

“There is hope with PANDAS,” she said. “There is hope.”

What is PANDAS?

PANDAS is the sudden acute and debilitating onset of intense anxiety with obsessive-compulsive-like issues and/or tics, in conjunction with a streptococcal infection (prior to the symptoms appearing) and manifesting at least two of the following:

•Sensory sensitivities.

•Sleep disturbance.

•Personality changes.

•Inability to concentrate or attention deficit hyperactivity disorder, ADHD.

•Developmental and age regression.

•Irritability or aggression.

•Separation anxiety.

•Urinary frequency.

•Deterioration in learning.

•Abnormal movements.

To connect to the local PANDAS support group, contact Kirsten Tuckey at mnpandas1@gmail.com.

More information about PANDAS can be found online at www.pandasnetwork.org.

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