Bringing Awareness to PANS/PANDAS

November 2016

Writer / Janelle Morrison

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) was first described by Dr. Susan Swedo in her study, “P.A.N.D.A.S.: Clinical Description of the First 50 Cases” in 1998. PANDAS occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more. Some children’s symptoms are so debilitating that they become near catatonic and unable to function at school. Becoming homebound creates many challenges for the parents and family of the child.

PANDAS Network estimates that PANS/PANDAS affects as many as one in 200 children. When strep cannot be linked to the onset of symptoms, parents should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes). PANDAS children may have moderate to dramatic improvements with antibiotics within a week of treatment although further interventions may be required. While the solution for the entire syndrome is still debated, many parents and doctors report improvements through prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmapheresis.

Matt and Rebekah Koch of Zionsville understand these challenges all too well, as their daughter, Elizabeth (9), was diagnosed less than a year ago with PANS. She exhibited a myriad of symptoms that went undiagnosed for several months, and would later be attributed to the disorder. Her symptoms raised many questions and fear of the unknown for her parents. Her diagnosis answered many questions and alleviated some anxiety, but also raised new questions regarding her treatment. Would they regain their bright and lively child who had lost her handwriting abilities, the ability to compute basic math and was quickly regressing into a “shell of herself”?

“There are clear cut signs, and we want to help parents to understand those signs,” Rebekah Koch stressed. “If your child is ‘your’ child one day, and then is a completely different child the next, you have to take it upon yourself to discover why.”
After receiving antibiotics for what was perceived to be a textbook case of strep, the Kochs began to notice severe changes in their daughter. They soon realized that they needed to quickly find the cause behind their daughter’s regressive behavior and physical functions.
“We’ve had a relationship with our pediatrician for years, and PANS wasn’t the most obvious diagnosis for him,” Koch said. “We had to seek out the specialists and experts. We went six months before we found someone who could recognize, diagnose, and start treatment for Elizabeth. We were fortunate because there are some families who have gone years and watched as their child mentally disappeared.

She continued, “Children who get immediate treatment in other states, where the awareness is at a higher level, have gotten well and recovered. Their lives have gone on. If parents and physicians recognize it and begin treatment early on, then it’s like a cold and the child can recover rather quickly.
Koch said that they started Elizabeth’s treatment in Chicago, but recently found a qualified local physician to treat their daughter. “Of course, it takes insurance to treat. Some families, particularly in Indiana, are struggling The awareness here is so minimal,” she said.
“There is certainly not the type of insurance coverage that states like Illinois have made available by law. Legislators in Illinois have passed two bills to provide insurance coverage for families dealing with PANS/PANDAS. The awareness there is far more advanced than it is here in our state,” she said.

Elizabeth continues her treatments and is in the fourth grade. But she is homebound and unable to attend school. “Now that we’ve identified the issue, the goal is to kill the infection, but the problem is that we have to identify the infection trigger. Most kids with PANS have compromised immune systems and show several active infections going on simultaneously. It is important to keep Elizabeth from being exposed to bacterial infections, which is hard because we have other children in our family and we can’t keep her in a bubble.”
The next step for the Koch family is to advocate and create awareness and connect families with qualified providers who can treat the disorders, educate other physicians, and provide other necessary services. They received a proclamation from Governor Pence for PANS/PANDAS Awareness on October 9, which Elizabeth proudly attended. That led them to think about what they could do to boost the awareness even further.
The Kochs took an idea spawned by their daughter, Elizabeth, to host an event where locals could learn more about what they were going through and how they could assist others. They hosted a family- friendly “Pedal for PANS/PANDAS” last month in Zionsville. More than 60 attendees came out to support the cause, including Chief Robert Knox of the Zionsville Police Department.

ZPD’s Sergeant Adrian Martin and his wife, Nicole, have a child with PANDAS, and Nicole and Rebekah met through an online support group prior to meeting in person at the event. Koch said, “It was like an instant connection with someone who knows what your family is going through and the challenges that your child is facing. You can read books and explain it to people but you just don’t know unless you live it.”

Rebekah’s husband, Matt, expressed his gratitude to all those who came out, shared the event on social media, as well as to local businesses that posted their event fliers.
“I am very pleased with the turnout and the coming together of the community, our friends and family,” Rebekah’s husband, Matt, said. He thanked all of those who attended and businesses that posted event flier. “Bekah did a tremendous job putting it together in a very short timeline. For us it was about creating awareness. To see all of the people attend and share the event on Facebook, we know that there are 60 plus more people who are now aware of PANS/PANDAS.”
“If we can be a conduit of education and awareness in some form or fashion, that is what we hope to accomplish,” Rebekah Koch concluded. “Even if it’s only one child that we’ve helped and one family, it makes it all worthwhile.”

For more detailed information on the symptoms, diagnosis and treatments for PANS/PANDAS, visit www.pandasnetwork.org.