Kai and Brielle’s Story: How a Family Coped With Nearly a Decade of PANDAS
Micaela Widman’s children Kai and Brielle both suffered for years from undiagnosed autoimmune encephalomyelitis. Learn how they finally received life changing diagnoses and treatment.
Micaela Widman and her husband Jerad live in Overland Park, Kansas. They have six children: Kai (22), Jace (20), Kale (18), Sterling (16), Brielle (14), and Brenna (10). From 2011 to 2018, both Kai and Brielle developed patterns of increasingly debilitating and unexplained physical and cognitive symptoms. These included personality changes, behavioral issues, and convulsions. After years of testing and being in and out of hospitals, both children were eventually diagnosed with autoimmune encephalomyelitis.
Below, Micaela discusses the many challenges families dealing with these conditions face when trying to get a diagnosis. She also cites the importance of education and resources about PANDAS/PANS and related diseases for healthcare providers in the Midwest. PANDAS/PANS and Autoimmune Encephalitis are gradually being diagnosed as a spectrum of the same attack to the brain. The Encephalitis Society and the Mayo Clinic estimate that 500,000 cases tragically go undiagnosed every year. The Widman family has a history of autoimmune illness and central nervous system illness. Identifying genetic propensity is a goal in AE/PANDAS/PANS research.
Learn more about their story, including how each sibling’s unique symptoms ultimately helped the family arrive at a diagnosis for both children.
Struggling to Understand Kai’s Initial Symptoms
Micaela and Jerad first knew that something was wrong in December 2011. At that time, Kai developed symptoms that began to rapidly increase in frequency and severity. While Kai was 12, Micaela says that in retrospect he had been showing signs of PANDAS for years prior. “Childhood symptoms manifested in the form of behavioral issues such as combativeness, extreme strong will, incessant arguing, and inability to empathize,” says Micaela. “We dealt with these issues as behavioral problems, not understanding that there was an underlying, associated health problem. I wish we could have had more information during those years.”
Micaela and Jerad couldn’t understand the sudden changes in 12-year-old Kai’s personality and behavior. “He started freaking out about everything, such as his brother sitting too close to him on the couch, or a small, easy homework assignment,” says Micaela. “[Kai] thought that things were threatening to him that were unnoticeable to anyone else. He also began having dark thoughts—as in, he didn’t want to live anymore.” Kai lost interest in school, something he had always loved, and Micaela says his personality “became more volatile, unreasonable, obsessed with arguing, and delusional. He also started running away.”
Kai’s family doctor couldn’t find any specific identifiable problem. Jerad, who is an ER doctor and family practitioner, was also unable to find anything after multiple rounds of testing. Over the next year, Kai’s symptoms worsened—at one point requiring him to be committed to a psychiatric hospital. Doctors cycled him on and off various medications to no avail. His middle school placed him on homebound studies because his behavioral issues were causing frequent disruptions in class.
A Turning Point and Kai’s Path to a Diagnosis
During this period of about 2 years, Micaela and Jerad had approached Kai’s symptoms as primarily a psychiatric issue. However, by the end of 2013, Kai was also experiencing increasing flare ups of physical symptoms. He frequently alternated between periods where he experienced convulsions or extreme levels of physical energy. These followed with episodes of lethargy and complete bodily collapse. Sometimes his face would swell or develop a pale, ashen color. He began to develop seizure-like symptoms where he would suddenly become dazed and expressionless, unable to move, speak, respond, blink, or even swallow. Micaela and Jerad realized that these flare ups of physical symptoms “correlated in time and intensity with the mental episodes.”
“A big shift in thinking happened then,” says Micaela. “Jerad and I started viewing Kai’s illness as a physical illness with mental manifestations.” This was a watershed moment for Micaela and Jerad, and it would later inform how they understood some of Brielle’s similar symptoms.
A note from PANDAS Network: Seizure activity is typical of Autoimmune Encephalitis (AE). It is not seen currently in the PANDAS or PANS diagnosis. This makes it a “milder” form of AE and is trickier to receive a diagnosis by a neurologist, in particular. Rheumatologists are increasingly the doctors diagnosing PANDAS/PANS because they focus on more detailed immunological testing.
For two years, they found success managing Kai’s symptoms through alternative medicine and researching his complex and confusing condition. “His illness was impossible to figure out. It had so many complexities, pieces, triggers, cascades, and as you can see, there were 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.”
In 2016, they had a breakthrough. Kai was referred to Dr. Alex Nelson, Functional Neurology Chiropractor, and also KU Med Integrative Medicine, where doctors ran a series of new tests. “We ran a test called the Cunningham Panel that tested five areas of his brain for antibody attack,” says Micaela. “Four of the five areas of his brain came back positive. Additionally, we had an ASO titer test run, and it came back high. This meant that Kai had high antibodies for strep found in his blood.” Doctors diagnosed Kai with PANDAS, dysautonomia, and Postural Orthostatic Tachycardia Syndrome (POTS).
The Onset of Brielle’s Symptoms
“In the middle of all of this with Kai,” Micaela says, “our daughter, Brielle, had started having severe stomach pain—dull, sharp, and burning. This all started in approximately 2013 when she was about five.” Brielle started experiencing intense gastrointestinal symptoms including vomiting, diarrhea and a horrible burning pain in her throat, as well as jaw pain and heart-rate variability. “This became a chronic and daily issue, and it got to the point where she often couldn’t live well,” says Micaela. “She couldn’t even sleep because of the pain and the stomach acid.”
Micaela’s experience researching dysautonomia before Kai’s eventual diagnosis set off alarm bells. She found that many of Brielle’s gastrointestinal issues were also key symptoms of the disease. She and Jerad began to think that Brielle’s condition may also be at least partially explained by dysautonomia. “Since the autonomic nervous system is so vast, the condition had carved a different path of destruction for each child,” says Micaela. “Hardly any symptom was the same in them, but we had noticed that some of the triggers for their symptoms were the same, such as sugar, lack of sunshine, lack of sleep, and stress.”
In March of 2017, a year after a week-long hospital stay during which doctors could find no specific cause of illness, Brielle developed a mix of flu-like illnesses with frightening neurological symptoms. These included muscle stiffness, spasms and loss of consciousness. These symptoms developed into severe and near constant seizure cycles. Brielle would struggle to breathe or control her muscles, often losing consciousness.
“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,” Micaela recalls. “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. She was unaware of the world she was in.”
Unlike Kai’s symptoms, which became gradually worse over time, Brielle’s condition worsened rapidly. “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.”
Trying to Get a Diagnosis for Brielle
Micaela and Jerad started seeing some consistent signs in Brielle’s test results. Both an MRI and EEG came back with the words “suggestive of encephalitis,” and she had elevated antibodies indicative of strep and walking pneumonia. “At Mayo Clinic, we found she was also positive for Bartonella and another kind of antibody called anti-GAD65, which the immune system isn’t supposed to make at all,” says Micaela. Additionally, a Cunningham Panel ordered by Dr. Nelson revealed that all five areas tested in Brielle’s brain were under antibody attack.
GAD65 enzymes in the brain are responsible for converting an excitatory neurotransmitter called glutamate into a calming neurotransmitter called GABA. The anti-GAD65 antibodies found in Brielle’s tests effectively block this process from happening. “Now, because of these antibodies attacking her GAD65 enzymes, Brielle’s body could not produce GABA and couldn’t get rid of the excitatory glutamate,” Micaela says. “Jerad did tremendous research, and from that, we could put it all together that her body was in constant excitatory distress, causing the seizures, hallucinations, spasms, stiffness, etc. The doctors, however, couldn’t, or wouldn’t, make the call.”
Despite these test results and continued symptoms, Micaela and Jerad struggled to get an official diagnosis. Doctors at two different hospitals even insisted that Brielle was faking her illness. “Finally, through the recommendation of Dr. Alex Nelson [a functional neurology chiropractor at HML Functional Care in Kansas City], who had tirelessly helped us navigate through these nightmares,” says Micaela, “we ended up at the University of Missouri, Columbia, where Dr. Michael Cooperstock, infectious disease specialist, took both Brielle and Kai into his care.”
Treatment and the Long Road to Recovery
Both Kai and Brielle were diagnosed with autoimmune encephalomyelitis by Dr. Cooperstock, who said they were the two worst cases he’d ever seen. Over the next several months, Brielle began an aggressive treatment regimen. First, three rounds of plasmapheresis to clear the autoimmune antibodies from her blood. Then, a single two-part round of Rituximab, a chemotherapeutic agent that kills the B cells producing autoimmune antibodies. Finally, a few rounds of IVIG. Kai also received a plasmapheresis treatment and several rounds of IVIG.
“These treatments were not the magic bullet to heal everything, but they were very helpful (extremely helpful for Brielle), and absolutely essential for laying the foundation for healing,” says Micaela. “Even after we had the treatments available, we had a lot of work to get their immune systems functioning properly again.”
Both kids required several years of follow-up treatments and therapy to recover from the brain damage they suffered. For Brielle especially, the journey to regain her language and motor skills was like starting over again from infancy. “Her brain had to redevelop from the bottom up,” says Micaela. “She had to go through all of her infant and early childhood developmental stages again.”
Brielle required physical therapy to help her learn to walk and speak again. She also needed MNRI occupational therapy to redevelop key motor reflexes and neurological connections. By the time she could to return to school, she also contended with the effects of her illness on her academic progress. Kai had to go through an extra year of high school after having been home-bound on and off through much of his prior 4 years. He even missed a full year at one point due to his illness. However, thanks to extensive treatment and therapy routines as well as supportive teachers and school staff, he eventually graduated with a 3.95 GPA.
Kai and Brielle’s Status Today, and the Importance of PANDAS/PANS Resources
After years of uncertainty, both Kai and Brielle are finally able to look toward a future without persistent symptoms. “Though it was an extremely long and intense journey, we eventually got both of the kids back,” says Micaela. “Both kids are walking miracles. Kai is now 99% symptom free, a junior at KU, a computer science major with a 4.0. He is on the KU disc golf team, works out at a gym almost every day, has a lot of friends for the first time in many years, and is even considering medical school. Brielle is also in full remission from autoimmune encephalomyelitis. She can walk, speak, is on-target academically and she has been seizure-free since 2020.”
While the family is now firmly on the road to recovery, Micaela points out how much more difficult their journey was due to the lack of awareness, resources and education about PANDAS/PANS and autoimmune encephalitis-related illnesses in their area. “There is not enough awareness for these illnesses,” she says. “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.”
Dr. Cooperstock—who oversaw Brielle and Kai’s initial treatment—has since retired, and the doctor who took over Brielle’s care, Dr. Ilene Ruhoy, is in Seattle. When Kai went into remission, Micaela says the family was unsure how they would handle a sudden flare up. “Our region is not equipped with doctors who are educated in these illnesses, especially one as complex as his,” she says. “Having education brought to doctors in Kansas and the Kansas City area would be incredibly valuable. The unmet need is currently devastating.” (Kai did experience a flare up in 2020, and is now under the care of Dr. Paula Kruppstadt and Dr. Brigitte Monrose in Texas.)
Addressing this gap in resources and education could also aid in earlier detection, diagnosis and ultimately treatment for these types of illnesses—saving families critical time. “I wonder how our kids, our lives and our story would have been different if we’d had resources available to us, if we could have avoided all of the devastation, trauma, and lost years,” says Micaela, “Again, early onset is the key. If you don’t catch it early, it spreads its destruction, and then there is a lot of damage to repair.”
Learn more about the signs and symptoms of PANDAS and find resources for healthcare providers on our website. You can also read more stories from families dealing with PANDAS/PANS as well as find a support group in your area.