I guess it was inevitable. Steep yourself in information about rates of childhood illnesses spiking to epidemic proportions, and you’re bound to become a maternal hypochondriac. But when my then four-year-old daughter first displayed symptoms of serious illness, I panicked. And as it turns out, my panic was justified.
My daughter had PANDAS, a controversial neurological disorder caused by strep. The doctors said otherwise, but I knew the truth: I’m her mother; everything is my fault. She woke up on Sunday with what we thought was the flu. And then it got worse. For 48 hours she was feverish, bundled up on the couch with a glazed look in her eyes, refusing food and medicine.
By Tuesday, the fever was gone—and then the worst part hit. Tantrums that went on for hours. Facial tics. Repeating the same phrase over and over. Regression. Extreme separation anxiety. Complete irrationality. She peed in the bed and freaked out because we took her “pee pee pants” off to wash them, and spent the next hour trying to get them out of the laundry to put them back on—wet.
In writing, it doesn’t seem that bad. But to see her banging, yanking, screaming—those eyes open wide yet unseeing—it was terrifying. There were flashes of her old personality: a few minutes of coloring, where she used to sit for an hour, a 10-minute stretch when made a play picnic on the floor, a few hours out of the house. But then something would set her off and she’d have a tantrum again.
We tried rationalization. We tried positive reinforcement—yes, with bribery. Then we resorted to punishing. But the worst thing was, we became afraid of her, and of what she might do.
I was the most frightened. Because at that point, she didn’t want anything to do with me. She wanted her current obsession—pee pee pants, blankie, a very specific set of toys—and her daddy to get them for her. Not me. “Mommy, leave me alone,” she screamed at me. She slapped my hands out of the way. Once, she even bit me. Complete rejection. This from a girl who earned her nickname—the Barnacle—because of the way she clung to me.
It killed me.
But I rationalized it. I was working; my husband was home. I was the one who held her down on the potty before bed so she wouldn’t wet it again; Daddy held her, crying, while I stripped off her clothes and washed her blankies. Of course she would be angry, I thought. I was the one doing these things for her own good.
So I copped out. I went to work, while my husband stayed home to take care of our daughter—and simultaneously Googled her symptoms.
From: Kevin Sarnoff
Subject: From Dr. Sears
Tantrums may reappear at four with a surprising twist. A four-year-old is smarter, stronger, louder and more adept at pushing parents’ buttons. The child now realizes he has his own power in the family, and that can be threatening to some parents. It is important not to squelch an emerging personality by overreacting.
In between emails, I Facebooked my friends. “Who took my sweet four-year-old and replaced her with a child who looks like her, talks like her but is totally insane?” I wrote. “The f*cking fours took her…” was the reply.
From: Kevin Sarnoff
Subject: Maybe she is just too gifted
One example that is typical with gifted four-year olds is not being able to handle transitions from one activity to another; bedtimes, switching from activities they are concentrated and motivated to do, going out to other locations that may be too overstimulating, or transitioning home and not being able to calm down. In these examples, part of the action plan will include activities to ease the transitions and possibly changes in the routine to reduce the events causing over-stimulation.
Yes, she was four, and yes, she’s smart. But it was like she went to sleep and woke up a totally different child. That couldn’t be normal, could it?
It couldn’t. And then he found this, from the National Institute of Mental Health:
PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette’s Syndrome, and in whom symptoms worsen following strep. infections such as “Strep throat” and Scarlet Fever.
The children usually have dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep. throat infection.
Two months ago, I had taken my daughter to the doctor because of a Strep scare. The doctor didn’t do a culture, but gave her a prescription for antibiotics—in pill form. I was supposed to crush them up and put them in applesauce. Yeah, right. After two days of trying that, and getting half a pill down her, they gave us another prescription for a liquid antibiotic. I mixed it with milk; I mixed it with apple juice. I mixed it with anything to get it down, but still only managed to do about half the bottle.
I hadn’t given her the full dose. Had it affected her brain?
What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and “attack” the heart valves, joints, and/or certain parts of the brain. This phenomenon is called “molecular mimicry”, which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.
In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.
A neurological disorder. A syndrome that might take months to dissipate—only to be re-triggered if she’s ever again exposed to Strep. And even though nothing in the research suggests that not following through on the antibiotics has anything to do with this, I knew it had to.
I’m her mother—everything is my fault.
But we’ll never really know. There’s no conclusive test for PANDAS. Some pediatricians believe in the condition; some don’t—ours was still on the fence. One study treated affected children with anti-obsessional medications like fluoxetine—better known as Prozac. Other doctors prescribe “waiting it out,” since most kids stop showing symptoms at puberty.
So that’s what we did. For days, we put her to sleep between us in our bed. I barely slept. I’d wake up to pull the covers back up over her, brush her hair back from her face, or just feel her chest rise and fall as she breathed. And I prayed that when she woke up she would look at me with eyes that I recognized, all the way down to her soul.
It worked. After a terrifying week, she woke up one day, bright-eyed and bushy-tailed and loving me again.
But it made me examine the process. As parents we’re conditioned to believe that if something is wrong with your child, you go to the doctor, get a prescription, and the child gets better.
But in these types of conditions, time and patience is the prescription, if not the cure. Luckily for my family, we didn’t need a whole lot of either before the situation changed for the better. But for those of you who face similar situations, I wish you infinite quantities of both.
The picture above is my now seven-year-old daughter. I originally published this piece three years ago on the blog formerly known as Mommy Greenest; today, PANDAS is better understood, and also associated with bacterial infections other than Strep. After a few recent brushes with the condition, I thought it was important to share it again here. I’d love to hear your comments on our experience. Have you heard of PANDAS? I want to know about it. Thanks!