A Journey to the Medical Netherworld

If your child gets sick, hope for something mechanical. Failing that, wish for something commonplace. This is a mother’s quest to find her daughter a diagnosis.

Alison Motluk is a freelance journalist who works in print and radio. Her recent work...

 

One day in early December, not so many years ago, my nine-year-old daughter caught sight of herself in the mirror at daycare, and noticed her face was bright red. All the kids had red faces, because they’d just come indoors after playing in the snow. But everyone agreed that hers seemed particularly bright. She felt hot, too, but a thermometer revealed she had no fever. She sat by an open window to cool down, and when I picked her up an hour later, she still felt hot and looked red, but she said it was going away. By the time we’d finished dinner, it was gone.

The next day, though, she complained of an earache. The winter concert was on that evening, so we let her go to school. She sang well. But when we got home that night, we could feel a small lump under her right ear. The following morning, we could actually see it, and we took her to the doctor.

All that day, the lump kept swelling. By nighttime it had grown to the size of a small mango. Her neck skin was stretched taut around it. By then, she was deep in pain: she couldn’t chew, couldn’t swallow, couldn’t talk, couldn’t even cry. We dosed her with Tylenol as we waited for the antibiotic to kick in. Finally, around midnight that night, a Friday, things began to turn around. The swelling receded. She fell asleep. Two days later, the lump was only a memory. 

Parents learn not to dwell on illnesses that go away. Kids throw up. They get fevers. They stay up all night wheezing. Each event is a crisis as it unfolds, but when it is over, the adrenaline drops and you move on. And this event, we decided, was now over.

Little did we know.

* 

Having a sick child is never easy. But if your child has to be sick, hope for something mechanical: a broken bone, a gash that needs stitches—something that can be physically mended. Failing that, wish for something commonplace. Chickenpox, a bladder infection, bronchitis. Doctors can manage these things with their eyes closed. If pushed, consider the merits of illnesses that are at least well understood—illnesses that can be definitively diagnosed and have generally agreed-upon courses of treatment. What you least want is something obscure, something not yet well characterized—and least of all, something both obscure and pertaining to the mind.

Seven days after the red face, and two days after the swelling had subsided, we knew for certain that our problem was not over. Something new had emerged: our daughter was unable to go to school. On the Monday, she said she was too tired. On the Tuesday, she said she needed another day. But when Wednesday rolled around and she hunkered under the dining room table weeping while her sister set off, we knew something was truly amiss.

At first, we suspected stress. She did well in school, but had lately been frustrated with homework. Could it be that? She said no. Maybe she had been bullied. Had other kids been mean to her? No. Was she unhappy? Was something bothering her? Did her ear still hurt? It was none of these things, she insisted. She really wanted to go, she said. But she couldn’t. She didn’t know why. 

We racked our brains. She was a mostly healthy kid, but had some anxieties. She couldn’t fall asleep on her own, for instance, and couldn’t stand doctors giving her needles, checking her ears or palpating her stomach. But this anxiety seemed different. My mind wandered back to an accident she’d had in the summer, where she’d slammed her head on the sidewalk. Could it be some post-concussion syndrome? It seemed unlikely. Then there was the fact that she’d been diagnosed years earlier with Tourette’s syndrome. Her tics were mostly throat-clearing, blinking and head-shaking—mild enough that her pediatrician was suspicious of the diagnosis—so that didn’t seem a likely cause either. We were stumped. 

Winter break arrived. During those two weeks, other oddities began to show up.  She did not want to go outside, for instance, and when she did, she preferred it to be at night. She confided that she was less likely to “get sick” if she didn’t go out in daylight. She seemed clingier than usual, but also less comforted by our presence. There was the night when we just wanted to forget our troubles with an episode of Mad Men. We let her sit next to us while we watched, but the TV was in the basement, a “scary” part of the house, and she was terrified. She sat there whimpering at first, gradually crying harder and louder, until we couldn’t even hear the television.

Like many Canadians, I grew up believing that if a person gets sick, that person will be helped.

Despite all that, she was adamant that she’d go back to school as usual after the break—she talked enthusiastically about it. But when that January morning came, she woke sobbing and was unable to make herself go.

She is an oldest child, compliant, a rule-follower. She seldom lies. Most importantly, she had always loved school. We never suspected this was a ruse. But we had no idea what it was.

If only we could get her back into the building, we thought, she would see there’s nothing to fear. We strategized. She agreed to set out early with her dad, have a cookie in a nearby Starbucks, then head over to the school from there. But she could not even bring herself to walk past the school building. We arranged for a friend to come collect her so they could walk together—it was her idea—but before the friend came to the door, she insisted we call and cancel. Expecting, insisting and yelling only produced prolonged vigils under the table. An attempt to drag her kicking and screaming had also failed.

The deterioration was rapid. In the weeks since her ear infection, her temperament had changed dramatically. Though she had always been an anxious child, she was also easygoing and forgiving. No longer. The slightest affront—a misplaced comment, the wrong joke, a question about how she was feeling—would set her off. She’d burst into tears, rage, scream, sob, hide. It could take an hour or more for her to recover. We’d never seen anything like it.

By the first week in January, she could no longer be alone in any room in the house. Someone had to stand in the bathroom when she brushed her teeth, or in the kitchen when she ate. One of us had to be within sight at all times. She spent much of her day sitting in the hall outside the home office. 

By the end of that first week, she insisted she could not be “seen” by people from school, and she went to great lengths to avoid them. She would only leave the house during school hours, for instance, when her classmates were certain to be indoors. She refused to go to parks, playgrounds or toboggan hills in the neighbourhood. She refused to ride the subway, lest she be “trapped” inside with a fellow student.

By the end of the third week of January, it was hard to get her out the door even during those “safe” hours. But we felt we had to: we had visions of her becoming a shut-in. It crossed my mind that, if things continued this way, she could end up in an institution. These thoughts made me hyperventilate. We were determined to get her out at least once a day, even if it was just to walk around the block.

I say “just,” as though a walk around the block were a simple matter. It was not. She would hide—in the back stairwell, behind doors, under tables—and we would track her down and pull her out. Then she would scream and resist. “Feral” is the word I used to describe her in my journal. Resolutely, silently, we restrained her, and stuffed her into her winter clothes. She was tall—about four and a half feet—and strong. While her dad held her arms, I thrust her foot into a boot. She kicked me, kicked the boot off, kicked me again with both feet. When he reached for her legs, to stop her, she pounded him with her fists, then slapped him, even tried to bite him. After we’d dragged her outside, she’d cower behind a chair on the porch. We’d wrestle her out from behind it, sometimes toppling the chair in the process, and carry her down the stairs to be frog marched around the block.

It’s tempting, when you’re desperate for an answer, to see a pattern that isn’t really there.

Hardest of all was her sobbing and pleading. I found myself unable to suppress the feeling that, even though I knew I had her best interests at heart, I was brutalizing her. She was every bit as terrified as a prisoner strapped to a water board, unable to breathe. Her pleas were genuine. She begged us over and over to stop. She was appealing to us—her torturers—to have mercy on her. Please don’t make me walk outside. 

Some people—parents, teachers, adults with no claim to any knowledge about children whatsoever—opined, when they heard that our daughter could not go to school, that they would “just make her.” They are ignorant. They don’t know what it’s like to use force against a minor, to traumatize their own child and that child’s sister, to ignore the pleadings that a parent is hard-wired to respond to. If they knew, they would never say such a thing, or make the assumption that the parent hadn’t already tried their very best to get their child to comply. They also can’t know what it’s like to have other adults chastise them for being too soft, even as they worry deeply about being too hard, and about what these events would look like to casual observers, or on video. I can tell you what it would look like: child abuse. Because that’s what it felt like. 

And so we stopped.

*

From the start, we sought all the professional help we could get. Like many Canadians, I grew up believing that if a person gets sick, that person will be helped. Not only was there no ostensible financial barrier to treatment, it was also implicitly understood that there was no barrier to knowledge—that if the knowledge was out there, Canadian healthcare workers would employ it. By and large, Canadian health professionals know what they’re doing and they’re doing their best, a fact that is reinforced every time we patients mistake a swollen lymph node for a cancerous tumour or heart burn for a heart attack, and the doctor gently but confidently sets us right.

But our faith in experts can be just as easily shaken when we watch them wrestle with something altogether less ordinary. Doctors, psychologists, social workers all know a lot. But there’s even more they don’t know. Some are well-read and inquisitive and will strike out in search of an answer. Most, though, simply rely on their existing beliefs. And, for better or worse, those beliefs will be the filter through which all the evidence is sifted.

We tried to get access to any resource we could. We got on waiting lists for something called the Hincks-Dellcrest centre, and the Whatever It Takes program, and we called to ask about programs we’d heard about at the Centre for Addiction and Mental Health, the Toronto East General Hospital and the Hospital for Sick Children (Sick Kids). 

A sudden-onset psychiatric illness feels every bit as urgent as appendicitis, but unlike the immediate care you get for a condition like that, there are few treatments available on the spot for an illness of the mind. It would be sixty-five days before Hincks-Dellcrest would do a telephone intake, and more than four months before an in-person one was available to us. Whatever It Takes took twenty-one days just to get us the sign-up forms. An appointment with Sick Kids would not be available till one year to the day after the red face. For many other programs, she was the wrong age, or had the wrong type of problem or lived in the wrong part of the city. 

That very first day in January when my daughter couldn’t get to school, we emailed someone we’d worked with in the past, at the Tourette’s clinic. We hadn’t pursued treatment for the tics, because they didn’t bother my daughter and no on seemed to pay much attention to them. But the clinic psychologist, a warm woman in her mid-thirties, had offered cognitive behavioural therapy (CBT) to cope with bedtime anxieties. Even though it hadn’t helped, we had a good relationship with her.

She suspected, as we did in the beginning, that the problem was school-related stress. She advised us that the faster we could get a handle on it, the better. “There is always a concern that anxiety will expand when a child is not actively working on facing their fears,” she wrote in an email the following week. She suggested more cognitive behavioural therapy, but she said she was not able to do it herself. Our only speedy option would be a private therapist, she said, and that would cost $300 an hour. She gave no estimate of how many sessions it might take, but the implication was it would be many. This kind of adjunct health care is not covered by our public system, and we had no insurance—and at that point, we had no earnings either, since we were two self-employed writers consumed with figuring out what was wrong with our kid. 

We dreaded the social worker’s visit. Would she be a hard-ass? Would she try to shame our daughter? Would she try to blame us, or our messy house? 

Cognitive behavioural therapy is predicated on the idea that faulty thoughts often drive undesirable behaviour, and if you can change those thoughts, you might be able to change the behaviour, too. One form of CBT relies on exposing yourself to a small dose of the thing that causes you anxiety, and exploring the possibility that it’s not quite the evil that you think. Bit by bit, the theory goes, you can challenge your existing beliefs through experience and reflection. 

It makes a lot of sense. If our daughter could see that there was no harm in going outside, or being seen by classmates, that her face probably wouldn’t turn red again and even if it did, it wouldn’t matter, maybe then she could conquer her fear of going to school. Both her dad and I were quite familiar with CBT. In theory, tolerance for the anxiety-provoking agent should improve with exposure; doses can get bigger over time. But we were observing that small exposures did not seem to be making things better at all, but rather, they were making things worse. 

In a phone call, I asked the psychologist for specific clarification: how hard should I push to prevent this backslide? Was she sure this was the right thing to do? Don’t give in, she admonished, because it will only make things worse. But, she added, don’t let her get terror-stricken. I remember feeling a shiver of disbelief on hearing this. What exactly was she advising, given that the mere mention of going outdoors could bring my daughter to hysteria? I pressed the psychologist again, hoping for something concrete. But she could not find her way off that fence. It was the first pang of what would later become a deep fear: my “experts” had absolutely no idea what to do.

I can only imagine how frustrating it is for someone whose career is based on a single treatment to be faced with cases in which that treatment does not work. I could tell from the language she used, however, that in her mind, CBT does not fail her patients, but rather, some of her patients fail CBT. When she terminated our earlier bedtime anxiety sessions, she had said, “She is just not open to it.” Sometimes, when I’m angry, I like to compare psychological treatments to those in other branches of medicine. I imagine a health professional saying to a kid with leukemia, whose chemotherapy was not having the desired result: She’s just not open to the chemo right now. The implication was clear: it was my daughter’s fault that she was not getting better. She was not open to the treatment. She had not been actively working on facing her fears. She is not actively facing her cancer.

Our relationship with the Tourette’s clinic also gave us quick access to the staff psychiatrist—which is a rare gift in a province where you can wait many months for an appointment with one—and as an MD, he could write prescriptions. It occurred to us that if we could just chemically disrupt our daughter’s anxiety long enough to get her back inside the school building, she would see that there was nothing to be afraid of.

The psychiatrist laid out three pharmaceutical options. One was clonidine. Originally a blood pressure medication, it was now often used in Tourette’s patients to ease tics, anxiety and insomnia. It also had the fewest side effects, so that’s where we started. Unfortunately, in our child there was no anti-anxiety effect and it caused terrible headaches. So after a sixteen-day attempt, we moved on. 

“I love school. I have lots of friends. I really want to go back.”

Next we opted for the sedative clonazepam, a highly addictive but highly effective anti-anxiety drug. Again, the goal was to calm her down enough just to get her back outside and to school. Some children, unfortunately, experience what is known as the “paradoxical” effect when taking the drug, so, rather than being calmed, their anxiety is stoked. That’s what happened to us. After five days of near-mania, we abandoned this medication too.

And then came an upsetting encounter with the doctor. He was about to pen a prescription for an antipsychotic drug. It hadn’t been one of the three he’d mentioned at the start, and we knew that it had never been cleared for use in children in this country. We also knew it could have horrible side effects. We said no.

And so we came away with a prescription for option three: Prozac. To be fair, that had been the doctor’s first choice all along. He honoured our wishes to try the other two first. Her dad and I both knew a lot about SSRIs; I’d written about them for years, and he was taking them. The drug could take a while to kick in, have turbulent effects in the first two weeks and was known to worsen tics. Most worryingly, it had uncertain effects on a developing brain, and, if it worked, she’d likely be using it for the long term. We were also painfully aware that this was the last real trick the psychiatrist had up his sleeve.

From the first week in January, we’d also been working with the school social worker. It was her job to make sure truant children attended school. We were unusual in that we had called her about our daughter’s absence before the school had even twigged that she wasn’t there. We knew this probably counted in our favour, but nonetheless, we dreaded her visit. Would she be a hard-ass? Would she try to shame our daughter? Would she try to blame us, or our messy house?  

She inquired after the usual suspects: stress, bullying, sibling rivalry and marital tension. She wondered aloud if the fact that we both worked at home gave our daughter license to stay home too. We pointed out that we’d always worked at home, and she’d always gone to school.

Technically, our daughter was a “school refuser,” but she didn’t fit the mould at all. Typically, school refusers dislike school. They feel alienated, or are bullied by other kids. Even kids who stay out because of more garden-variety anxiety seldom say things like, “I love school. I have lots of friends. I really want to go back.” The social worker seemed as baffled as we were.

The school social worker helped fast track us into a group therapy session that was starting at the end of January. It was run by a centre that specialized in kids’ social, emotional and behavioural problems. The idea was that eight kids of a similar age would meet once a week for a couple of hours and work through their anxieties together, using CBT-type coping techniques. We thought these sounded like useful skills for our daughter to hone.

There was a long telephone call to coordinate her intake into the sessions. Her dad tried to explain what had been going on. He started to get apprehensive when the coordinator told him that it all came down to parental discipline. “If she won’t go to school, take away her TV privileges and send her to her room for a time out,” she advised. “You have to be firm.” He was speechless. Somehow the coordinator had failed to grasp that our problem was well beyond the scope of “1-2-3 Magic,” that our daughter was suffering from serious phobias, and that one of them was being alone in a room.

“We believe that she is truly scared.”

Strangely, although the coordinator thought the problem was our parenting skills and the key was strict discipline, she never inquired about those things. She never heard about kids who weren’t allowed to watch more than thirty minutes of TV in a day, and often watched none, kids who were disciplined enough not to eat chocolate after 5 p.m., even a coating on a cookie, because it kept them awake. She didn’t know that our kids had a strict bedtime routine, followed rules about outdoor play and used no foul language. She didn’t know that they were routinely praised by hair stylists, swimming pool staff and librarians, for their impeccable behaviour. She just made assumptions. Later, people who knew us found the story funny. “Have they ever met you?” our sister-in-law asked sarcastically. But we knew not to draw attention to our parenting practices: it was clear that if a dearth of parental discipline wasn’t found to be the culprit, it was only a matter of time before a suspicious eye would fall upon our presumed excess. The parents are always the first suspects.

We had misgivings about the program, but even if it wasn’t quite right for us, we believed it might help. That first night, it took ten minutes to coax our weeping daughter into the room. Still, afterwards, once we were home, she said it was okay, and that the other kids were nice. She did the coursework and said she was looking forward to the following week.

But one week later, when it was time to leave, she became hysterical. The previous week the group had discussed the things that had made them anxious. Other kids had mentioned tangible fears, like animals biting them. But she had been unable to voice hers. Now she was frantic. “What will they think when I say I’m afraid that my face will turn red?!” she screamed at us. “It doesn’t even make any sense!” Still, we insisted she attend.

I had begun keeping daily notes on her decline, and had started rating incidents from 0, “nothing unusual,” to 5, “extreme.” According to the little blue Dayminder, this was only our second-ever 5+. In the “important” section, I wrote WORST DAY EVER. It was February 3, and things were still going downhill. Though we had stopped the forced marches, this night we had to bustle her out to the car. But before we got her buckled inside, she took off. We had to chase her along the icy sidewalk, and then into the street, where she suddenly darted. We caught her, carried her back to the car and strapped her in.

It was the thick of rush hour, and what should have been a twenty-minute drive took three times that long. She wailed the entire way, kicking the seat back. She threw her water bottle at my head. My biggest fear was that she’d open the door and leap out into highway traffic. We had never in her nearly 10 years seen anything like this. She had never run off, never thrown a projectile. Then, as we approached the centre, she began shaking and hyperventilating. “Please, please, don’t make me go in!” We tried to reassure her, reminding her that she had actually enjoyed the previous week, but she would not be calmed. “Please! Please!” she croaked through gasps and sobs. “I promise I’ll go to sleep on my own if you just don’t make me go in! I’m sorry! I promise! I promise!”

Her dad and I both froze. Did she view these sessions as punishment for her anxiety? She had always been afraid to fall asleep on her own. Was the prospect of attending really so bad that she was willing to bargain away her most elemental comfort? By this time she could barely breathe. I went into the centre on my own and spoke to the coordinator.

She reminded me about how she had discussed rewards with my husband. I interrupted her: “The fact that you are talking about rewards suggests that you don’t understand what I’m saying.” I tried again to explain, but once more she started in with her mantra. Inside my own angry head, I was thinking, If both your legs were broken, yet I insisted you walk up the stairs, what reward could I offer you to make you do it?

“What will she do when you leave?” she asked me. 

“She’ll be relieved.”

“What will she learn from that?” 

“She’ll learn that her parents take very seriously the way she feels,” I said. 

She began to lecture me about how my daughter’s behaviour is only reinforced when I give in. I stopped her again.

“No, it’s not,” I said. “Not according to my notes. I’m watching for exactly that and I’m not finding it. Her behaviour is unpredictable, it is not rational.” I argued that she is sick, and she simply cannot behave the way I want her to, or even the way she wants herself to.

“What will you tell her when you leave?” she asked. 

“I’ll tell her that I’m sorry we put her through this, and we believe her that she is truly scared.”

That night, while I was drying my daughter’s hair before bed, she asked me if I really believed her fear was real. I said yes, that I really believed she’d been terrified. She said, good, because she had been. I added that I didn’t believe she had anything to be terrified of, but I still believed her feelings were real. She agreed that that was absolutely right, that there was nothing to be afraid of. But she was afraid.

*

We weren’t long into our crisis before we started to suspect that the root problem was not primarily psychological at all, but biological. We started to wonder if perhaps chemistry, rather than disordered thinking, had triggered these events. The onset was so sudden, so stark, so inexplicable. Other, earlier anxieties could plausibly have arisen from her own overwrought thinking: her fear of darkness, for instance, or of needles. But a sudden paralyzing fear of having your face turn red? Of being seen by classmates?

We searched the medical literature for clues. It helped that we were both science journalists, who routinely spent our workdays searching PubMed, reading scientific papers, interviewing scientists and doctors and weighing the merits of research findings.

I knew that a change in the body’s chemistry could have major effects on brain and behaviour. An overactive thyroid, for instance, can make you nervous and agitated, but the problem goes away when thyroid levels are righted. Could it be something like that? I made the rounds, reading up on dysfunctions relating to the thyroid, the adrenal gland, the pituitary gland, the pancreas. I read about the amygdala, a part of the brain associated with fear responses, and about PTSD and memory formation. Googling “red face” turned up rosacea, lupus, scarlet fever. I considered everything, but nothing quite fit. 

No, it’s not a “tantrum” like the ones your kids have. No, it’s not “defiance.” It’s not “bad behaviour.” We know what those things are, we’ve seen them too, but this is something much more severe, much more alarming.

For a day or two, I hovered on Cushing’s Syndrome, which is caused by an overabundance of the “stress” hormone, cortisol. Irritability and anxiety are key features of the syndrome. Visible signs include a rounded, sometimes red face, weight gain around the middle and bright stretch marks on the torso. She had these signs, but only mildly. Stepping back, we had to admit she lacked more symptoms than she displayed. It’s tempting, when you’re desperate for an answer, to see a pattern that isn’t really there.

Her pediatrician, when he saw her in late January, ruled out Cushing’s and our other suspicions fairly quickly. He was a thorough, thoughtful practitioner and scrutinised her with a seasoned eye. In addition to the behavioural symptoms, she complained of aching joints and muscles and suffered from headaches. He admitted that he didn’t know what was wrong. We mentioned that her right ear still glowed red and hot several times a day, which we found odd. Could the December infection still be somehow active? He thought it unlikely. Could he swab her throat or test her blood to be sure? He said no.

He was kind and respectful, but the fact is he offered us absolutely nothing. He had no theory. He did no test. He gave us no advice. Even as he mocked the psychiatrist, he referred us to no one else. 

It was as though each professional we consulted had become a caricature of their professional selves. The psychologist thought our daughter needed to “face her fears.” The psychiatrist thought she needed drugs. The group therapist thought she needed rewards and punishments. Her pediatrician scratched his chin. Not one of them had a coherent theory of why this might have happened. They were all just reciting from their handbooks. We took our daughter home, no further ahead, and just as alone.

*

It’s hard to describe what it’s like to watch your child step into the abyss of mental illness. I’ve struggled to find the right metaphor, but I have only this: she is falling, as if into a deep, dark well. The descent feels quick, yet as though it’s happening in slow motion. You gasp, you reach out to grab her. You scrabble for a grip on her arm, her clothing, her hair, anything. But you can’t catch her, you can’t stop her. She keeps falling. All you can do is watch. You don’t know where this will end, but you sense it will end badly.

It was a very lonely time. Many friends and neighbours did not know. Concerned people from daycare or school would remark on her absence. Was she okay? Would she be back soon? There was no easy way to explain what was going on. Years of twitches and coughs we had easily and unselfconsciously summarised with, “She has tics.”  Now, there were no summaries. No, it’s not a “tantrum” like the ones your kids have. No, it’s not “defiance.” It’s not “bad behaviour.” We know what those things are, we’ve seen them too, but this is something much more severe, much more alarming.

We think we are open-minded about mental illness, but for all the well-intentioned campaigns and measured disclosures about depression, mental illness is still stigmatised and poorly understood. People still put jokes about “schizophrenia” and “OCD” on their Facebook feeds in a way they would never dream of doing with cancer or heart disease. People send classroom cards and flowers to kids who miss school for sudden abdominal surgery, but not for kids sick in the mind. Mental illness is still somehow considered a person’s own fault. A character flaw. A danger, even. Most days, I simply could not cope with condemnation in addition to crisis. So I stayed quiet, I stayed inside. 

We were now about two months into our crisis and this was the first full recounting of my daughter’s illness that any health professional had been willing to hear.

The isolation was only deepened by the sense that the medical establishment had abandoned us. Not only did it take forever to get their attention, once we did, they were of no help. We thought very carefully about what they each had to say. But in the end, we decided that their learned advice seemed at best misguided and, at worst, harmful. We both had a strong internal sense that what our daughter needed, above all else, was protection and compassion. So we backed off.

Ordinary rules were suspended. She did not have to sleep alone, eat alone, brush her teeth alone, leave the house, be seen by friends, or go to school. She did not have to face her fears, old or new. There were no consequences. From that point on, we would accept that, for whatever reason, our daughter could not control her behaviour in the way she had always been able to. She should not be punished for this any more than a child who develops epilepsy should be punished for a seizure.

It flew in the face of all the professional advice we’d been given. But we were convinced that it was the right thing to do. Looking back, it is the strength it took to come to this decision, and to stick by it, that makes us most proud as parents. 

* 

We wanted answers. Medical people often chastise parents for not “accepting” a diagnosis of mental illness, as though we are somehow delusional or proud. But it’s not the diagnosis parents have trouble with, it’s the shocking absence of knowledge about causes and treatments, made worse by doctors’ inability to admit their ignorance. It’s precisely because doctors offer so little that parents try so hard.

Not long after the visit to the pediatrician, I began looking into a syndrome that had intrigued me years earlier when I’d first heard of it, as a reporter. It was called PANDAS, for “pediatric autoimmune neuropsychiatric disorder associated with streptococcus.” The idea was that in some children, antibodies against streptococcal bacteria mistake cells in the child’s own brain for the invading cells and accidentally attack the brain instead of the strep. (Well-established disorders like rheumatic fever, Sydenham’s chorea and glomerulonephritis are thought to be caused in a similar way.) 

I found a US National Institute of Mental Health (NIMH) website that described how some children, following a strep infection, show a sudden, dramatic onset of obsessions, compulsions, tics, irritability and separation anxiety. The then-director of the NIMH had recently described the work on PANDAS as “the most compelling case” for a link between infection and mental illness, a link that many of the top mental health researchers in the world are pursuing vigorously. I downloaded some scientific papers—there were scores—and began to consider PANDAS as a possibility. 

Admittedly, my daughter’s case did not fit perfectly. First of all, we did not have any evidence that streptococcal bacteria had caused her December infection. (The doctors did not do the necessary testing to determine that.) Also, she did not appear to have classic obsessive-compulsive disorder, which usually has two components: an extreme anxiety or preoccupation—about germs, say, or safety—plus some kind of action that soothes it—excessive handwashing, for instance, or ritualistic counting of special numbers. My daughter seemed just to have over-the-top preoccupations: the fear of the red face, the fear of being seen by others. Added to that, she had had tics for years and they had not worsened immediately after the infection. But much of the rest of the description did seem to apply: the suddenness of onset, the strange obsessions, the anxiety, the emotional extremes and an infection of some sort at the start.

I emailed the main researcher at the NIMH with a short summary of our case, and she emailed right back. She told me they had just launched a clinical trial using a treatment called intravenous immunoglobulin, or IVIg, which involved infusing the child’s blood with donor antibodies in order to dilute his or her own antibodies. In theory, this should help inactivate the unwanted immune response. IVIg is routinely used to treat a variety of illnesses, including toxic shock syndrome, necrotizing fasciitis and Kawasaki disease, and the researchers were doing the clinical trial to confirm that IVig could help in PANDAS as well.

We were screened by telephone, first briefly and then at length. We were now about two months into our crisis and this was the first full recounting of my daughter’s illness that any health professional had been willing to hear. By this time I had retrieved the record from the walk-in clinic where we’d taken her for the earache and lump—her own pediatrician had been unable to see her that day—and the record said, among other things, “ear infection right side, potential cellulitis/mastoiditis.”

The following day, the NIMH researchers informed us that she had passed the screen: they thought she probably had PANDAS, and they wanted to proceed to the next step. That involved allowing them to scrutinize all her medical records since birth, and having us go down to Washington, DC for an in-person interview. If all went well, the IVIg or a placebo would take place in the two days following the interview. (For ethical reasons, kids who got assigned to placebo were guaranteed real treatment six weeks later.) 

But there was one big problem: the procedure involved not only inserting an IV into her arm for two days, but also multiple draws of blood and cerebrospinal fluid— aka a “spinal tap.” Our daughter was needle-averse at the best of times; in her current state, I worried that she might attack anyone who came near her with one. The research team and our family both took a deep breath to imagine how this might play out.

Even as we came to terms with the fact that she probably couldn’t manage the IVIg, there was great comfort in having even a tentative diagnosis. It was the first plausible explanation we’d heard. It meant there might be a cause, a reason for why this all happened. It meant there might be a possible treatment. It meant there were words to describe to others what was going on: She got an infection and it caused an autoimmune reaction. We are trying to treat it. Perhaps this brought more consolation than it should have, but in our free fall into darkness, it was a sign that we were somewhere, rather than nowhere at all.

*

At a follow up appointment with the psychiatrist—which my daughter was unable to even attend—I asked what he thought of the PANDAS theory. He smirked. He told me point blank that he’d never in his seventeen years of practice ever come across a case that resembled PANDAS. 

“What about ours?” I asked. 

I reviewed it for him. On December 8, a red face. On December 9, a serious infection. On December 10, a new unwillingness to be seen in public. On December 13, an inability to go back to school. Thereafter, extreme anxiety, irrational obsessions, emotional outbursts and odd behaviours. 

He listened to my summary, but he remained unpersuaded. He glanced through my daughter’s file. He reminded me that she had a history of anxiety, and that just that autumn, I’d mentioned an uptick in outbursts surrounding homework. He pointed out that for years she had been unable to fall asleep without someone nearby. This is all true. His view was that the current condition was simply an exacerbation of an existing anxiety. It was just the same old animal galloping a little faster—no new mount, no new rider.

Medical professionals were loathe to fan the flames of controversy by recommending use of drugs that were controversial for reasons all their own.

But doctors are often forced to draw arbitrary lines between events. Just because a person is skinny doesn’t mean that sudden rapid weight loss shouldn’t be taken seriously. A person with a history of headaches can still get head pain that signals meningitis.

I have thought very carefully about what the psychiatrist said and I accept that he may be right: maybe it was a sudden dramatic worsening of her underlying anxiety, caused by who-knows-what. It’s certainly possible. But his opinion is based more on what he has read and observed elsewhere over the years—on his acquired knowledge and beliefs—than on the details of my daughter’s specific case. He has never to this day taken a full history of the events surrounding her illness. Anyone reading this article already knows much more about her illness than that psychiatrist.

I had neither clinical experience nor a medical education. And I was a biased participant. But I had known the patient for almost ten years, and had observed this episode unfold firsthand. I had medical records, journal entries and a Dayminder full of carefully-documented ups and downs to guide my conclusions. I had read the scientific literature. Ultimately, it came down to his feeling about whether a line should be drawn in the sand versus mine. He thought there should be no line. And I drew one, in December, right after the earache. 

*

To raise the possibility that your child might have PANDAS is to enter a sort of medical netherworld. Non-believers will instantly and forever label you as a fanatic. Believers will, at best, struggle with the diagnostic criteria and treatment options; at worst, they will be vague and inscrutable to the point of uselessness; some will even insist that their willingness to treat be kept secret, as though they were practicing witchcraft. To many other doctors PANDAS is entirely unknown, therefore suspect.

I had heard that antibiotics might help.  The idea had come up during the NIMH screening. But in follow up emails, the researchers would not be pinned down about which antibiotic might be best, how much, how often, how long—or even why they might work. When I asked for a paper or treatment guidelines to show my doctor, they lamely offered links to parent-led support groups. They could recommend no doctor in Ontario who could help. A Harvard pediatrician known to treat PANDAS, who I contacted through a colleague, left me a cryptic telephone message. “If she were mine,” he advised, “I’d give her a trial on antibiotics before taking her down for an IVIg trial.” When pressed, though, he too declined to hint what the treatment might consist of.

I could sense at the time that something strange was going on, but I couldn’t put my finger on what it was. A few doctors clearly believed that antibiotics could help us, and they were willing to whisper that in our ear, but they were not willing to write it down and sign their names to it. My best guess is that they already felt under fire for defending PANDAS, and were loathe to fan the flames of controversy by recommending use of drugs that were controversial for reasons all their own.

As a mother, I had always prided myself on not contributing to the antibiotic resistance problem. I wasn’t one of those overanxious parents who marched their kid to the doctor at the sight of a runny nose—or a mere sore throat. Somehow I’d come to the conclusion that fighting it off on your own was always the best first option. But now I began to wonder if I’d been cocky. Untreated strep, I now know, can lead to serious illnesses. My own brother, I discovered only later, had spent two weeks in hospital with rheumatic fever at age four.  Now I began to wonder if strep might account for my daughter’s years of tics too. No one really knows what causes Tourette’s. Could it be part of the PANDAS spectrum?

Before parting ways with my daughter’s psychiatrist, I asked if he would consider prescribing antibiotics, even though he didn’t believe in PANDAS, just to see if they would work. I can’t blame him for saying he would not. He asked me what I thought they might do, biologically. It’s a reasonable question. We both knew that, if the initial infection was over, the traditional work of an antibiotic would be done. The only other reason an antibiotic might work was if it were having some sort of additional effect—as an anti-inflammatory, for instance, or in dampening the immune system. I had read about these possibilities. He guffawed and dismissed them as “grasping at straws.”

Whether he knew it or not, antibiotics are sometimes used as anti-inflammatories. Several studies had investigated their use in children with cystic fibrosis, for instance, for whom traditional anti-inflammatories had not worked. Antibiotics have also been used as immunomodulatory drugs. After a kidney transplant, an immunosuppressant drug that is sometimes prescribed to prevent organ rejection is rapamycin, which belongs to a class of antibiotic known as a macrolide. The same drug is put into stents that prop open arteries in the heart to keep cells from proliferating there. This particular drug is not used as an antibiotic per se, but other macrolides are mainstays: erithromycin, clarithromycin, and azithromycin, to name three.

It’s hard not to notice how differently I am treated when I am wearing my parent hat, rather than that of a science journalist. I’ve spoken to probably hundreds of psychiatrists, neurologists and neuroscientists in my career, and I know that, if I’d raised those possibilities as a journalist, I might have been congratulated for having read the literature so thoroughly. Journalists who read widely and deeply are specialists; parents who read widely and deeply are nutcases who spend too much time on the internet.

* 

It wasn’t easy to get the antibiotics. Our pediatrician had never heard of PANDAS, and when I told him our daughter had been accepted into the IVIg trial but that we wanted to try antibiotics first, he was hesitant. I begged him. I was in tears. I reminded him of the ear that continued to sporadically glow red. Reluctantly, he prescribed a fourteen-day course of cefprozil. On the off chance that an infection had persisted, he said, this would be sure to eradicate it.

Her dad and I both detected a change in her during that two-week period—something was more level about her—so when that ran out, we decided to continue. We found a US pediatric neurologist who agreed to write us a prescription after a telephone consult. He and I talked for an hour, I gave him my credit card number and he wrote us a script for azithromycin. But since he was not licensed to practice here, we could not use it at our local pharmacy. I appealed to our pediatrician again, to see if he would honour the prescription, but when a week passed and he had not returned my calls, we decided to explore other avenues. (A couple of weeks later he would give us a one-month prescription, which we used, but he made it clear he would not do so again: an immunologist at Sick Kids had told him PANDAS was bunk.) 

Azithromycin is a legal drug in Canada, but we felt like criminals as we investigated procuring it. We found an online pharmacy in British Columbia that filled foreign prescriptions by getting a Canadian doctor to countersign. We discovered that in some countries, like Mexico and Argentina, antibiotics are sold over-the-counter, without prescriptions. We had friends who regularly went to those places, so we kept that as a backup. Foreign doctor friends stockpiled their free samples for us.

Our quickest option, though, was to cross the border into New York state and have our prescription filled there. Online, we found a Walgreen’s just across the bridge in Niagara Falls and the US doctor called in the prescription. It was a trip filled with stress: first they could not find the prescription, then they could not fill it, then when they finally managed to piece it together using multiple small bottles, the ten-day supply came to $382. Back on the Canadian side, we stood in front of the falls, beaten down but defiant, and we listened to the roar. 

*

It is hard to pinpoint exactly when, but at some point, my daughter stopped getting worse. Then, with excruciating slowness, she started to get better.

I do not know whether the antibiotics had a hand in her recovery. Certainly, her turnaround coincided with taking them, but there was nothing lock-step about her improvement. Temporarily stopping the medicine did not bring disaster, and taking it did not instantly restore her former self. There were no blood tests or throat swabs to confirm anything; no one would do them.

Had we opted to try Prozac, and had the same results, my guess is that that drug would have been given the credit, no questions asked. Likewise, had we decided to do CBT at the outset, the same zigzag progress would have been deemed a therapy success. (So, too, I’m sure, IVIg.) So, while it’s true that I don’t know what it was that made the difference, I do know what it wasn’t: it wasn’t SSRIs, it wasn’t CBT and “facing her fears”, and it wasn’t tough love.

From my notes, I can see that two days after starting on cefprozil in February, her emotions became slightly more even. A few days after that we had three whole days with no upsets at all. It was noteworthy. The extreme separation anxiety—not being able to be alone in a room—pretty much went away during that initial two-week course. With the exception of two brief episodes, so did the red-hot ear. On the other hand, her tics were now becoming much more pronounced. And it’s not like she was herself again—far from it.

There were encouraging milestones. In early March, she set foot in the school for the first time since December. She went in after hours, with a teacher who’d been giving home instruction. Then she did this again. And once more. It felt like a miracle. 

Just days after that, she was able to participate in her sister’s birthday party. She’d been worried about it for almost a month, uncertain about whether she should stay upstairs and out of the way, or come down and face, for the first time, children she knew from school. The night before, she announced: “I’m not sure why, but I’m just not that worried about it. I’ll go.” It was a dance party, and she was euphoric to find herself able to participate.  Three weeks later, she was able to host her own birthday. She began going to a local park outside of “safe” hours, visiting the library, and having select friends over for play dates. Progress was much slower than it sounds in retrospect, but we sensed we were moving uphill.

By this time, we had her on the third antibiotic, which she ended up taking for thirty-one days. By the time that prescription had ended in mid-April, her most severe symptoms had resolved. She could go out into the neighbourhood, bump into friends on the street, even discuss the particulars of returning to school. But she still could not make herself do it. 

Even as the core symptoms receded, we had to deal with their residue: she was embarrassed and a little ashamed. She increasingly spoke about how difficult it would be to explain her absence to her peers. Through a friend, we found another child psychiatrist, and, by some alignment of the stars, she was able to take us on right away.  After our first appointment, in her small office in an uptown apartment, she independently suggested the diagnosis of PANDAS.

With the central crisis over, we thought our daughter might be well enough to try CBT again. So the new psychiatrist, who was encouraging and gentle by nature, worked with me on strategies to make getting to school more palatable. Every morning, when her sister and Dad left for school, we two left as well, and walked a little closer to the building each day. It took over a month to make it the five-hundred-odd metres to the edge of school property. Then, in the evenings, we started walking through the playground. First just across the perimeter, then along a path, then straight through. Soon, she was going inside after school to have chats with the social worker, or visit with the librarian. 

Occasionally, while in the school, a teacher she knew would drop by to say hello. They made it look casual, as though these were chance visits, but in truth, they were all on board to bring her back. She was lucky she was such a well-loved student, and we were lucky that the school felt so committed to her.

We set goals for her return. After Easter. For the Fun Fair. Before the end of the school year. We missed them all. Despite these failures, though, the trend was steadily up. All summer, she insisted she’d be going back with everyone else on the first day. She bought a new lunch bag and pencil case. She decided what she would wear.

The psychiatrist warned us not to get our hopes up. She was confident our daughter would be back full time by the end of October, but predicted a less than fifty percent chance it would happen the way we were hoping. She booked us an appointment for 10:30 on the morning of the first day of school, just in case.

But on that morning, our little girl woke with the normal excitement of the beginning of a new school year. She got dressed and packed her water bottle and snacks into her backpack. She met up with a friend and they walked together, a little ways ahead of her sister and me, to the school. It had been nine months since she’d last attended as a student. At the door of her classroom, she turned and smiled, and, without much fanfare, gave a small wave. That was it. She was back. It was as if nothing had happened, or, rather, as if something had happened, but it was over.

Previous

‘Emotions Are More Important Than Monsters’: An Interview with Apichatpong Weerasethakul
The filmmaker behind Uncle Boonmee Who Can Recall His Past Lives and Cemetery of Splendour on how film and dreams influence each other, Bangkok’s uniformity in American movies, and dinosaurs.