The acronym PANDAS makes one immediately think of the cute creatures that are famous at Zoo Atlanta, but the disorder is scary and it has effected the lives of Peachtree City residents Eric and Heather Bergholt and their daughter, Emma. They will try to raise awareness at an event at TCBY in Peachtree City this Friday.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. For kids like Emma, illnesses like strep throat, mononucleosis and pneumonia or other infections can trigger a complex disorder with symptoms like motor or vocal tics, obsessions/compulsions, anxiety, sensory issues and others. Basically, the antibodies that would normally fight off the infection, attack the basal ganglia in the brain which effects mood and movements. One form of treatment for this, the one that Emma currently undergoes once a month, is IVIG (intravenous immunoglobulin), which overrides the negative antibodies and reboots the immune system.
In 2006, when Emma was three years old, Heather Bergholt noticed her daughter doing some eye-blinking and fist clenching while she was battling what looked like allergies but was a sinus infection. The infection was treated and the tics went away. The next year, the tics returned with some head jerking when Emma had a virus, and later that year, when she was battling strep, Emma had tics that were so unique they looked like seizures. By Christmas of 2009, when Emma was sick there were more symptoms including meltdowns and OCD behaviors.
Heather Bergholt had been looking for answers and in 2010 saw a piece about PANDAS on “Today” on NBC with an immunologist. That piece led the Bergholts to Connecticut and eventually to the IVIG treatment.
Since November of last year, the Bergholts travel to Connecticut every four weeks for the treatment for Emma, who just received her 10th treatment.
“The doctors recently told us that this is the best they have seen Emma in two years,” Heather stated, adding that while Emma is still very susceptible to infections, the hope is that any setback will just be for the duration of the illness.
Emma is back in school. She is in the third grade at The Campus and attends for a few hours a day right now with the hopes of getting back to a full schedule soon.
The event this Friday came about because TCBY owner Mike Murtaugh had been present at a fundraiser at NCR, where Eric Bergholt works.
“I had the opportunity to be present as Eric was handed the check because one of the fundraisers at NCR was selling TCBY during lunch periods and I shared with Eric our commitment to host a “Emma’s PANDAS Day at TCBY” fundraiser,” said Murtaugh. The event will also feature some giveaways, ARAC at NCR has donated four tickets to Stone Mountain as one of the drawing prizes and there will also be a basket of prizes from the Braelinn merchants given away. ARAC, the Associates Recreational Advisory Council, is a nonprofit organization representing the associates of the Global Service Logistics in Peachtree City, Georgia in respect to recreational need, community activities, and all other activities initiated for or by the associates. A portion of all sales this Friday will go to the family to offset the expenses of traveling to Connecticut for the IVIG treatments, which will continue every four weeks through at least October. The event also gives the Bergholts’ a chance to spread awareness about PANDAS.
“We didn’t know where to go at first and it didn’t fit any standard diagnosis,” Heather Bergholt said. “Maybe an event like this will reach others that are dealing with PANDAS or help form more connections.”
The Bergholts have found a tremendous amount of support in Connecticut, where families from all over the country gather for time with the doctors who specialize in PANDAS and offer the IVIG treatment. It is far away from Georgia and home, but, as Heather Bergholt said, “nowhere is too far to go for your kids.”
To learn more about PANDAS, visit http://intramural.nimh.nih.gov/pdn/web.htm
To help the Bergholts and enjoy an event and some delicious treats in the community, head to TCBY in the Braelinn Village Shopping Center in Peachtree City on Friday.