By Traci Chapman
A Mustang woman is among the organizers of an event that could help thousands of Oklahoma children and their families.
That woman is Kristen Murdock and the event is Oklahoma PANDAS Awareness Day, scheduled for Oct. 9 at the State Capitol. PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections – affects about one in every 2,000 children, a condition many times overlooked by parents and health professionals.
“I would love for the information about this disease and this event to be spread throughout Oklahoma, so everyone can take part and can come and learn more about what it means and how many people it affects,” Murdock said.
The Mustang mother knows about the condition first-hand, both as the mother of an 11-year-old son afflicted with PANDAS and as an RN who works as a substitute nurse for Mustang Public Schools.
Spreading the word is the focus of PANDAS Awareness Day, set for 10 a.m. until 1 p.m. The event will feature speakers like Dr. Peter Stanbro, an Edmond psychiatrist who specializes in treating disorders like ADD, post-traumatic stress and autism, and behavioral health providers and other healthcare professionals will also be on hand to answer questions and provide information to both families, nurses and other healthcare providers.
“I consider Dr. Stanbro a PANDAS expert,” Murdock said. “He and the others participating can help and guide families dealing with this issue, as well as nurses and other healthcare professionals looking to learn more about PANDAS and better serve their patients.”
The Murdock family’s experience mirrors that of many others dealing with PANDAS, she said. For years, the family searched for answers to explain their son Ethan’s behavior – the tics, the rages, the mood swings. While they were blessed with what Murdock called their amazing pediatrician of 18 years, other families have not always been so lucky – some have shared their experiences of being told by pediatricians who didn’t believe PANDAS was a real condition their concerns were invalid.
Ironically, the answer is easily at hand, with a simple blood test, Murdock said.
“That’s what’s frustrating, or one of the frustrating things about this – it only takes a simple, inexpensive blood test to diagnose PANDAS,” Murdock said. “For some children, an intensive or long-term course of antibiotics can send them into remission.”
For Ethan Murdock, a tonsillectomy helped ease his symptoms so much doctors declared he had achieved remission. While the disease is still there and the battle is not yet won, Murdock said the family can now move forward knowing what they are dealing with and with hope Ethan can live without the constant challenges marking so much of his early life.
The problem with PANDAS is it is masked by what doctors might think are other conditions, things like attention deficit disorder, attention deficit hyperactivity disorder or obsessive-compulsive disorder – ADD, ADHD and OCD. Symptoms frequently suddenly appear, or become much worse in a child who already has any of those conditions, following a strep infection, while motor or vocal tics, compulsions or obsessions and rage episodes are also possible results of PANDAS.
While PANDAS strep reactions generally appear in children age 3 to about puberty, adolescents can also be affected, although those incidents are rare, according to U.S. Department of Health and Human Services National Institutes of Health.
PANDAS, while similar to PANS – pediatric acute-onset neuropsychiatric syndrome – is not the same, because children suffering from PANS have had an infectious or other trigger or environmental factor create what NIH officials called a “misdirected immune response results in inflammation on a child’s brain.” PANDAS, on the other hand, is strictly caused by strep infection.
“So many people have no idea what PANDAS is – including a lot of people in the medical field,” Murdock said. “Children and families are counting on us.”
For more information about Oklahoma PANDAS Awareness Day, contact Murdock at 405-921-5534 or via email at firstname.lastname@example.org.