A PANDAS (or PANS) story

[One day, I may see one.]

My son, Ezra, was kidnapped. It was on October 28, 2008. He was 3 ½.

It didn’t happen because he was unattended in a shopping cart or running around the playground. It was while he slept, tucked safely in his bed. We awoke to his screams and found him soaked in urine. The next morning, a child who physically looked like Ezra woke up. He had Ezra’s blond hair, big green eyes, and long eyelashes. But he didn’t have his personality, compassion, or wit. He was no longer sweet-natured, inquisitive, loving, and incredibly verbal. Instead he screamed for hours, stuttered, made repetitive noises, and became very selective in the foods that he would eat. He was angry, defiant, and raged for hours. We used to snuggle, now he wouldn’t let me hold him — his body stiffened each time I reached out for a hug.

His pupils were huge and dilated, with a confused and vacant look. Ezra had violent, angry, intense tantrums about everything. We were raising a boy that we didn’t recognize, a boy that my husband and I jokingly named Ferdinand—after the storybook bull who looks intimidating but is actually kindhearted.

My background is in behavior therapy—I knew not to give in to his rages because it would reinforce the behavior. So I did what my education and training had taught me, and what I recommended to my clients’ parents. I encouraged him to “use his words.” I used time outs, sticker charts, praise, and positive reinforcement. Nothing worked.

What was wrong? My husband and I agonized over the cause. I’d started back to work—it must be that. His baby bother started to crawl and need more attention—maybe that’s it. Or maybe he’s so intelligent that he knew how to manipulate us. Others suggested it was because he was our first child—or that we weren’t strict enough with him. Most felt that he’d outgrow it.

Our lives continued on eggshells until Ezra was 4 ½. I was giving him a warm bath, which usually calmed him. I drained the tub and asked him to step out. He put one leg out and then put it back in. He did it again and again, crying that “it wasn’t right.” He stood there, cold and shaking, repeating the step over and over. I let him go on and on as my heart sank. This was OCD! I wrapped a towel around him and carried him out of the bathroom. He kicked and screamed, begging me to let him do it again until it was right. It started to make sense to me. Everything had to be “just right.”

But OCD didn’t explain the huge pupils, frequent trips to the bathroom, deterioration in fine motor skills and cognitive ability, or tics. It also didn’t explain his frustration and fits of rage. More trips to the pediatrician were fruitless. I started searching the internet for answers…

I called the doctor immediately and asked if Ezra could have PANDAS. She had never treated it before but agreed to administer a blood test to check for elevated strep titers. The levels were high. We were given an antibiotic and sent to a neurologist for an official diagnosis.

I was excited for that neurology appointment—anticipating that it would bring resolution to our problem. I knew in my gut that PANDAS was the cause and I just needed the neurologist to tell me how to fix it. In my mind, the doctor would provide a key to unlock Ezra from his captor, ridding us of Ferdinand once and for all. My hope was short-lived. We were told that a neurologist won’t ever diagnosis PANDAS because neurologists don’t believe that it is a real disorder. Instead, it was suggested that Ezra was having seizures. An EEG was ordered.

The neurologist became the first in a long line of people my husband and I called “hostage negotiators”—people who we had to work through, and with, as we tried to secure our son’s return.

Meanwhile, my mind was racing. Maybe if it was seizures—and maybe if he took medication we’d get Ezra back. The EEG came back “abnormal” with spikes and waves in the frontal lobe, but not in a typical seizure pattern. Nothing could be done for him—we were told that some kids just have abnormal EEGs and are fine with them…

Meanwhile, Ezra continued to slip away. He’d been a toddler who met every milestone early and talked circles around his peers. Now he was quiet and withdrawn with “Autistic-like features.” At the age of two, he could read hundreds of words and loved math. But as he made his way through first grade, Ezra no longer wanted to go to school, play sports, or attend cub scouts. He didn’t want to leave the house. I had to carry him into school, where staff would hold him back as the doors closed behind me. In school, his handwriting was slow and messy, and he crumbled under the pressure of timed math tests. He was distracted, zoned out, and wouldn’t respond when his name was called.

We would wait months to see a new doctor, only to be told that they didn’t believe in PANDAS. I kept thinking—my child has been stolen—this boy is not him. Where is the AMBER alert?...

We saw five Pediatric Neurologists, three Cognitive Behavior Therapists, a Developmental Pediatrician, Occupational Therapists, Chiropractors, an alternative healer, and a Naturopath. They suggested diagnoses including anxiety, bipolar, mood disorder, ADHD, Transient Tic Disorder, and Tourette’s. We were told to medicate him with Ritalin, Zoloft, and Clonidine. We were put on waiting lists to get appointments with any doctor that I thought could help.

On February 8, 2015, Ezra came inside after playing in the snow. He sat on the couch with a vacant look in his eyes. He turned his head to the side and touched his chin to his shoulder. Then he did it again. And again. I felt his head. He had a low grade fever. The fever was gone by bedtime, but the head-turning tic did not stop. Every 3-5 seconds he turned his head, no matter what he was doing.

The head-turning tic evolved quickly into a full-body twist and facial grimace. Eventually he lost all fine motor control. Ezra stopped eating and went from a skinny 60 pounds to an emaciated 55 pounds in just two weeks. His body never stopped moving, wiggling and swaying in the few seconds that he had between tics. Ezra could not focus and often forgot what he was doing—he began falling off of chairs and walking into walls. He couldn’t dress himself or get his shoes or coat on for school. I’d kiss him goodbye and sit in the idling car, watching him hop, tic, and even fall down in the doorway of the school. I called the pediatrician. The results of a blood test for elevated strep titers came back very high, and Ezra was placed on antibiotics…

We drove for six hours to meet the 14th and final hostage negotiator, a pediatric neurologist who is a PANDAS expert. He listened to my extensive list of Ezra’s symptoms with an understanding that no other doctor had. As I sat, listing the symptoms that had stolen my son’s childhood, I realized the gravity of my words. If I said the right things, the doctor may deem Ezra worthy of one of the rarely given “magic cures” I’d read about. My voice began to crack and tears welled up in my eyes. I could tell that my emotions were making the doctor uncomfortable so I fought to stay strong—like a grief-stricken parent on TV begging for their child’s safe return…

The doctor called two weeks later with the results. Ezra had all of the markers for PANDAS and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). His immune system was overreacting to Strep bacteria (causing PANDAS) and the Coxsackie virus (causing PANS). He was to continue on antibiotics and have a tonsillectomy. If needed, he’d receive an IVIG treatment. IVIG floods the body with healthy plasma and overrides the misdirected antibodies that cause the PANDAS symptoms.

Finally, we had plans for a cure and not just a band aid.

This doctor provided the key I’d been trying to find for six years. It took thousands of dollars, months of antibiotics, a tonsillectomy, and IVIG. Two days after that magic plasma dripped into Ezra’s veins, my son, the real Ezra, looked into my eyes again. His pupils were small—I could see the beautiful green of his eyes. The cold darkness was gone. This was my child—the one I had lost so many years ago. The one that no one else had noticed go missing.

http://www.huffingtonpost.com/entry/how-my-son-was-kidnapped-without-ever-leaving-home_us_57f8399fe4b0b665ad817fea?

Courtesy of my daughter.

See:  http://childnervoussystem.blogspot.com/2015/06/maybe-one-day-ill-see-one.html