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My Child Was Diagnosed With PANDAS 3 Years After Onset of Symptoms

It all started when my son was 4. My boy was intelligent and super articulate for his age. So when he woke up on a Monday morning and couldn’t talk, I knew something was wrong. One minute, he was fine, and the next minute, he was panicked and unable to communicate.

Alarmed, I was at a loss of what to do. I called Children’s Hospital, and was told he could be seen in April. It was February. “Aren’t you concerned this could be a stroke?” I couldn’t understand why his primary care doctor, the hospital, and even friends, thought it was just a typical occurrence for a 4-year-old child. In my eyes, the sudden onset and change in our son was scary and obvious.

I posted a video of my boy on Facebook. One friend urged me to have him evaluated for pediatric autoimmune neuropsychiatric disease associated with strep (PANDAS). It was an unknown term to me, but I took her advice and called his primary doctor to urge him to begin by testing my son for strep. He was not interested. I persisted. I never did get the results from that test.

Antibodies to the strep infection mistakenly attack proteins in the brain resulting in neurologic or psychiatric symptoms. There is a larger umbrella of terms, called pediatric acute-onset neurological syndrome (PANS), which is defined by severe and sudden onset of unexplainable, extreme, neuropsychiatric symptoms in response to infection. PANDAS falls under this umbrella, but to have PANDAS requires a temporal relationship with group A strep.

PANDAS can create a very sudden onset of neuropsychiatric symptoms, such as tics, because of the body’s abnormal autoimmune response. These symptoms can decrease, can improve over weeks, or sometimes just over a period of days. However, if they get another infection, symptoms can suddenly worsen again or other symptoms manifest.

The stuttering and stammering continued for a few days, albeit at a decreased state. As it wore off, it became less alarming and I started to question my own sanity. Perhaps this was just a developmental stage. I started to think maybe I had been overreacting. Then, like a light switch, on the 10th day, his speaking returned to normal. He woke up, I understood him clear as day. And I forgot.

Months went by, but by summer, more unusual and concerning behaviors resurfaced.

During these difficult times, we  realized we could see it coming in his eyes. His pupils became black. I now know that this black foretelling, the dilation of his pupils, was actually a sign of inflammation in the brain, infection-induced encephalitis.

Our little boy displayed many concerning behaviors, sometimes for weeks at a time before disappearing completely.

A diagnosis of PANDAS is based on five criteria, including acute abrupt onset of OCD and/or severe tics. Symptoms are relapsing and remitting in nature. PANS is often caused by or exacerbated by underlying infections, such as Lyme disease.

Three years after his telling onset of symptoms, we were informed that our boy had elevated antibodies in his blood for strep. His anti-streptolysin O, anti-dNase were abnormal (there was also vitamin B deficiency, low ferritin, abnormal WBC, ANA, Epstein Barre and active Lyme bands). Our doctor — this was our Lyme specialist, not our primary care physician — explained to us what PANDAS was, and pointed out via physical examination that our child also exhibited Sydenham’s chorea. Sydenham’s chorea is a neurological disorder characterized by rapid, jerky, uncontrollable, irregular, and involuntary movements, especially of the face and limbs. Other symptoms include muscle weakness, slurred speech, headaches and seizures. Sydenham’s chorea is another marker for PANDAS.

PANDAS is highly misunderstood, and we had to find ourselves a doctor who specialized in it — another doctor we would have to seek out on our own. We quickly were put on the long waitlist for a local hospital in Boston (four-year waitlist), but the next closest specialist, three hours away in Connecticut, was available in two weeks time. We still see him to this day.

By the time our child was diagnosed, three years had gone by since I had first heard the acronym PANDAS. During these three years, our son had episodic symptoms that relapsed and remitted. At times new symptoms manifested, and others increased in severity. Because of the delayed discovery of both Lyme, his co-infections, and now PANDAS, his immune response progressed into a chronic autoimmune condition.

For a child with PANDAS, a simple dose of ibuprofren around the clock will immediately calm symptoms of brain encephalitis. For a child with a chronic condition, this treatment can take years. You begin a trial of treatments, therapies, interventions, following up with your doctor every few months and adjusting depending on the patient response.

It’s been seven years since our PANDAS diagnosis. We’ve taken oral antibiotics and antivirals, we’ve gone the holistic approach, we’ve fought for unaffordable IVIG treatment, we’ve taken med breaks, we’ve switched up our med regimen. We are still fighting.

It’s been seven years of traveling out of state for treatment every few months to see a doctor. I look back and read the careful history I’ve taken of my child’s life, and I see it all there, glaring at me. I see the evidence of what should have been recognized. I see PANDAS. If only we had had adequate medical care, doctors who were aware, who were proactive, who were able to treat him.

My son is learning to identify his own signs of a PANDAS flare, and to ask for help. He is beginning to understand, to look in the mirror when he is feeling the heat of his brain on fire, to identify his triggers and find ways to self-regulate. His determination and adequate medical care make a difference.

A version of this story first published on Scary Mommy.

Getty image by djedzura

Originally published: April 3, 2019
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