The first time it happened we were eating dinner as a family. School had just begun after Christmas break. The mood was light, jovial, and normal. It would be the last normal dinner together for months.
Toward the end of the meal, my seven year old daughter suddenly leapt off her chair. Fear had replaced her smile. The pupils of her eyes were dilated into large, black orbs. She clutched her throat as she cried, “I’m choking! I can’t swallow!”
I immediately scooped her up afraid she had a piece of food lodged in her throat. As the episode continued, though, it became clear she wasn’t choking. Before I could feel any relief, a new dreadful reality washed over me. My little girl was having a panic attack.
I held her tight, rocking her in my lap. We focused on taking slow, deep breaths together. Exhaustion eventually took over and she collapsed in my arms, her head against my chest, sound asleep. I told her she was going to be okay. As I tucked her into bed that night, I had no idea how hard it was going to be to keep that promise.
By the next morning, my daughter who was fearless, independent, creative, a lover of her family, friends, and all God’s creatures, who did well in school and wanted to be a veterinarian one day was overwhelmed by anxiety. She couldn’t leave our house or my side. Her mind had been taken over by OCD, and the panic attacks were coming one after the other. She had a tic and was experiencing sensory sensitivity. She couldn’t focus, her school abilities diminished, and she had stopped eating all solids.
I rushed her to our pediatrician who was as baffled as we were. She asked if anything had recently happened to our daughter or our family. I could only think of one thing. Ten days prior my daughter had suffered a serious case of strep throat.
Could her sudden onset of symptoms have anything to do with her recent strep infection? Our pediatrician assured me that was impossible, so I left her office with nothing more than a referral to a psychiatrist and a neurologist that was months out. In the meantime, my daughter’s symptoms grew worse. I quit my job, and she was no longer able to attend school.
As I spent my days managing her symptoms, I begged God to help us. The more I prayed, the more the strep infection came to mind. I couldn’t escape the feeling that everything we were experiencing was rooted in the strep.
I began doing my own research and ended up on the National Institute of Mental Health’s (NIMH) website learning about something called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
Researchers at the NIMH already knew strep could cause an immune reaction triggering an attack on the heart leading to carditis or the brain causing Sydenham chorea, but they had also discovered that sometimes a similar attack occurs in the brain leading to OCD, tics, anxiety and other neuropsychiatric symptoms.
Additionally, they had discovered that strep isn’t the only trigger for this type of attack. Other viral and bacterial infections such as influenza, chickenpox, mycoplasma pneumonia, and Lyme disease are also common triggers. When the trigger is other than strep, the illness is referred to as PANS ( Pediatric Acute-Onset Neuropsychiatric Syndrome).*
PANDAS and PANS are considered neuroimmune disorders. Following an infection, there is an onset of OCD, tics, and/or anxiety (or a sudden increase in severity of these symptoms) as well as combinations of other neuropsychiatric symptoms such as panic attacks, irritability, oppositional behavior, emotional lability, depression, restrictive food intake, decline in school abilities, developmental regression, attention issues, hyperactivity, sensory sensitivity, and enuresis or urine frequency.
When I presented the possibility of encephalitis to my pediatrician, she decided to run another strep test. Although my daughter was no longer exhibiting any of the normal symptoms associated with a strep infection, the test was positive.
This isn’t always the case. Sometimes the infectious trigger occurred a while back and doesn’t show up on tests or blood work. With much of the medical community still unaware or skeptical of this type of encephalitis, it is not uncommon for a child to go undiagnosed or misdiagnosed for months or years. Subsequent infections after the initial trigger can cause flares; symptoms intensify and new symptoms emerge.
My daughter was treated with two rounds of antibiotics and spent months on a prophylactic dose. By the eighth day of treatment, we began to see improvement. By the time we stopped all antibiotics, she was well on her way to recovery. Today, a few years later, she has no remaining symptoms of the encephalitis and has returned to her independent, creative, loving, and happy self.
Antibiotic treatment, sometimes long term, is the first course of action. Other standard treatments involve steroid therapy, IVIG, and plasmapheresis.
Diagnostic and treatment guidelines have been published by a Research Consortium in the Journal of Child and Adolescent Psychopharmacology. Although we long for the day there is a diagnostic test, for now it is a clinical diagnosis. More research is needed, but the published guidelines give the medical community the best tools available today to care for their patients.
When I recall that season, it still brings tears. My sweet daughter suffered so much and our entire family suffered with her. But, I also see the faithfulness of God holding us together when we were falling apart, I see His hand guiding our steps when we were at a loss, and I can attest to the fact that His love never fails.
My prayer is that by sharing my daughter’s story, God will use our family to raise awareness of this type of encephalitis so other children will receive the help they need.
For information on neuroimmune disorders (PANDAS/PANS), the diagnostic and treatment guidelines, and to keep up with the latest research, visit pandasppn.org.
Marcella Franseen has spent the better part of the last two decades involved in nonprofit work and women’s ministry. Originally from the Midwest, she and her husband enjoy raising their three kids in beautiful South Carolina. She writes at lightandhighbeauty.org.