This Is What It's Like To Live With The Monster That Is PANDAS

by Thaiadora Katsos Dorow
Originally Published: 
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It all started when he was four. My boy was very intelligent for his age, and super articulate. So when he woke up on a Monday morning, and couldn’t talk, I knew something was wrong. Suddenly, my articulate little boy was stuttering and stammering, trying desperately to get his words out. “Wh -y-y-y Ca-n-n-t I T-t-t-t-a-a-lk?” He asked me with wide eyes. It happened like the switch of a light. 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 screeched, to deaf ears. I couldn’t understand why his primary care doc, the hospital, and even friends, thought it was just a typical occurrence for a four-year-old child. In my eyes, the sudden onset and interference in our lives, the magnitude of the change in our son, was scary, debilitating, and obvious.

During the week, I had to register him for preschool. The coordinating teacher took me aside and said, concerned, with a question in her voice, “You didn’t mention in your registration that he stuttered…” I replied, “Right, but he doesn’t! He just woke up yesterday and here it is.”

I posted a video of my boy on Facebook. One friend urged me to have him evaluated – for 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.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep. 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 PANS – pediatric acute-onset neurological syndrome – 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, their symptoms suddenly worsen again or other symptoms manifest.

The stuttering and stammering continued for a few days, albeit at a decreased state. As the severity of his speech problem wore off, as it became less alarming, 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 tenth day, his speaking returned to normal. There no longer was any sign of that stuttering and stammering. He woke up, I understood him clear as day, and everything returned to normal. And I forgot.

Months went by. Soon it was summer and we were heading to the beach. My little boy was singing in the backseat, excited about building a sand castle. As soon as we stepped out of the car, he began to screech. As he hopped from foot to foot, I watched him, puzzled. And then, my boy started to flap his arms. He hopped across the sand flapping his arms like he was going to fly. “Look at that,” I whispered to myself, as I watched him in wonder.

There were several other occurrences like this. There was arm flapping at the beach. There was twitching. There was a facial tic, then a neck tic, then a shoulder tic, all surfacing with such force. There were sudden intense fears, nightmares, insomnia. My boy suddenly could no longer sleep alone, if he could sleep at all. In fact, he couldn’t be in any room alone. He was so afraid of being without me, that he followed me around – room to room to room, begging all the while to be held. There was refusal to go outside for an entire summer, due to a sudden fear of bugs. He regressed in every behavior. At 6 years old, the baby talk resurfaced. He suffered extreme sensitivities to light, sound, touch, and fear of bugs that flew. We kept the curtains drawn.

Our attempts to get him outside were futile. Being in public places like a restaurant or the mall would turn him into a ball of anxiety, as he tried to block out the noise. He suddenly couldn’t step over the threshold into a crowded place. He refused to eat any foods except pasta and pizza, and often physically choked and gagged at the table if attempting to eat anything else. The most difficult changes to deal with, however, were the sadness and sudden fits of uncontrollable rage. I have vivid memories of my boy wrapping himself up in the curtains, sobbing, “Make it stop…,” memories of a five-year-old boy, sobbing, “Why can’t I stop crying, mommy?,” of him begging for hugs.

For so many nights I listened, helplessly, to my tiny, little boy crying and screaming about how much he hated himself, how alone he was, how no one cared about him. My heart was ripped out of my chest repeatedly in the presence of such a sad, lonely boy.

And then, he would have sudden fits of rage. We called these fits of rage, “incidents.” When our boy was about to bolt, about to throw items, about to fling himself down the stairs, we began to connect that we could see it coming in his eyes. When his pupils became black, I would look at my good friend who was often by my side during these dark early days and say, “There is going to be an incident…” and the two of us would prepare to intervene. We 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 wailed and banged his head against the wall for reasons we could not understand. When his personality left him and was replaced by a raging, scary, monster of a being, we started to take huge precautions like ensure that all sharp objects like scissors and knives and kebab spears were all kept in the same, locked, drawer. We held this kicking, screaming child in an attempt to keep him safe. Off my young daughter would go, out the door and down the street to knock on a neighbor’s door, just to keep her safe or to keep her free from witnessing such sadness and chaos.

Once the angry, sad, anxious monster of a boy surfaced, he would stick around for weeks at a time, before disappearing so our sweet boy could return. As time went on, the monster took over more often, and for longer periods of time. We started to lose our son.

A diagnosis of PANDAS is based on 5 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 ourself a doctor who specialized in it, another doctor who 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 a few weeks. 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. Three years had gone by since our boy had lost his voice, then found it again. 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 diagnosed with PANDAS or PANS, ibuprofren will calm tbe flare and symptoms will go away with appropriate medical intervention. 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. Every time there is a flare up of symptoms, the experience takes the breath and life out of me, and during these times, the desperation and the devastation is just as loud as it was seven years ago. I still do not know how I will manage this life when the dark days hit.

My husband comes home from work with a cold? You and I might get a cold. Spend a day in a moldy library? You and I might get a headache. Spend the day with someone who has the flu? You and I might get a fever. This boy here, he will get a bout of uncontrollable tics, a period of depresssion so deep and dark you don’t know if you are going to be able to pull him out of it, rage and OCD that suits you up in your own protective armor of suppressed emotion, exhaustion, avoidance of all normal activities until the healing comes, violent tics that are painful to watch.

It is now seven years after our son’s PANDAS diagnosis. It’s been seven years of traveling out of state for treatment, every few months, to see a doctor who we feel, sadly, fortunate only costs us $175 per visit per patient — because we’ve had to pay so much more per visit for other (Lyme) specialists and naturalpaths, treatments, and labs along this journey. 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. This little boy would not have wasted seven years of suffering.

My child is surviving. He is homeschooled, due to some very timultuous times in school, years of repeated illnesses taxing his suppressed immune system and causing excessive absences and tardies. Regardless of having a 504 plan at school, the pressure was too much. The uncontrollable exposures to allergens and illnesses, the need to follow a strict regimen of oral therapies, detoxification strategies, and special diet constraints, all due to his destroyed immune system, are also better managed at home. He 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 calm. He will continue to fight, because he has the determination to be well. That is all any of us need to survive. Determination, and adequate medical care.

If your child develops PANDAS the next time he is exposed to strep, I pray for you that he can be treated by a doctor in your own state, that you could, therefore, be avoiding countless medically necessary and financially devastating trips out of state for treatment, and be able to avoid the recurrent potential of losing your own home. You will be able to avoid continuous unavoidable mounting medical bills that you have to pay out of pocket. By getting adequate treatment in your own state, you may even be able to avoid a chronic state of an illness that wasn’t recognized, and you will be able to have your child back. You can say goodbye to the monster.

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