“This is a scary illness and it is so treatable if you find help in time” —Diana Pohlman, PANDAS Network Founder

For parents of young children, extreme changes in behavior can be unexpected, shocking, confusing, and overwhelming. For parents of children with PANDAS/PANS, it can take years to find a cause. Parents Micaela and Jarad fought for almost 10 years to find a diagnosis for their children, Kai and Brielle. Stacie and Peter sought answers for 5 years for their children, Collin and Autumn. Even a “quick” diagnosis, like for Katy and her parents, can still take up to a year. Most parents spend countless hours and money on doctor and hospital visits only to be told their children are faking their symptoms or that the cause is purely psychological. Their children are prescribed prescriptions for medications like antidepressants that stop working or never have any effect at all.

“[Kai’s] illness was impossible to figure out. It had so many complexities, pieces, triggers, cascades, and… dozens and dozens of mental and physical manifestations,” says Micaela. “It was discouraging that no doctor could figure out what was wrong with our son, and no test showed anything of major significance for five years after his main onset.”

Brielle, Kai’s sister, who also has PANDAS, had completely different onset symptoms. In March 2017, Brielle developed a flu-like illness. “We were devastated as we watched our daughter lose her abilities to walk, speak, eat, process auditorily and visually, and connect with the world in any way. Worse, in the short and few moments in which she could see and hear, she didn’t recognize us anymore. Her cognition went to zero… Within 27 days of her onset, our daughter was essentially gone,” says Micaela. “She had lost everything about her except for her vital signs of life.”

For other parents like Stacie and Peter, their children’s journey happens more slowly. Stacie says, “Typically with PANDAS, you’ll hear about how they wake up one day and you have a completely different child, but that didn’t happen with us… I think a lot of people miss a PANDAS diagnosis because they are looking for that sudden onset, and because they don’t have it they think it’s not PANDAS—but ours was a slow progression for both kids.”

Both children were able to behave in school. When they came home, things would fall apart. The children would fight with each other, but they were not typical sibling fights. “My husband is a firefighter who works 24-hour shifts at a time, and at first their fights would happen mainly when he was at work.

“Early on, I would sit watching our children going psychotic and call him crying saying, ‘I don’t know what to do anymore.’ He would say, ‘Well, discipline them.’ Discipline didn’t work. Initially, the days he was home, it wouldn’t be as bad. I felt like a complete crazy person because nobody else saw it. My parents are very close with them and witnessed enough to know something was wrong, but nobody saw what I was experiencing alone in front of me on those nights. Autumn would take decorations off the walls to use as a weapon. She would circle the house running, typically with something off the walls, and with dilated pupils saying, ‘Wah wah.’ I almost didn’t believe what I was experiencing.”

What were these children and their parents dealing with? PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) are two conditions that children can develop after experiencing a strep infection (the most common cause). When this happens, a child’s brain can become inflamed and their immune system can mistakenly attack healthy brain cells, leading to autoimmune issues that affect the functions of the central nervous system. Dramatic changes in personality like obsessive-compulsive disorder (OCD), anxiety, tics or other abnormal movements, personality changes, a decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more can suddenly occur. In some children, these changes seem to happen overnight and in others, there is a slow progression.

If your child has been diagnosed with strep and/or has frequent stomach aches and episodes of nausea, and other symptoms like those mentioned above, it is important to have them seen by a specialist. Strep bacteria can be found in the stomach; it doesn’t always manifest itself as a sore throat. According to the PANDAS Network, rheumatologists are increasingly being consulted for these types of diagnoses since “they focus on more detailed immunological testing.” But many doctors are still unaware of these conditions and parents frequently struggle to get a proper diagnosis.

Micaela says, “There is not enough awareness for these illnesses. So there are likely many other parents out there who are struggling with what they naturally assume are psychiatric issues with their kids—issues that could very well be relieved in some cases with treatments for the immune system.”

The mission of the PANDAS Network is to help parents become aware of this rare and lesser-known disorder. To learn more about PANDAS/PANS, visit the PANDAS Network Discussion Forum on Inspire to hear more from parents or share your story.