Bipolar at 5?
When her daughter was diagnosed at age 5, she fought the label. Then she realized that her once happy, effervescent daughter was turning into a tormented stranger.
by: Dorothy O'Donnell | June 22, 2018
I wasn’t at my 5-year-old’s school the day she started to rip off her clothes and twirl in the rain in front of the music room. But when her kindergarten teacher, Mrs. Stapp, called to tell me about Sadie’s latest episode of troubling behavior, I wasn’t surprised. I’d witnessed plenty of similar incidents.
I could picture Sadie’s apple-shaped face tilted up to the sky, her dark eyes glazed, oblivious to Mrs. Stapp’s instructions to get in line with her classmates. I could see her mane of honey-streaked hair fanning out behind her, scrawny arms stretched wide. I could almost hear her too-giddy laughter. And I imagined the other kids, scrunched together against the music room wall, gaping and snickering as they watched her.
That rain dance earned Sadie the dubious honor of being the first student in nine years of teaching that Mrs. Stapp — a kind and patient woman Sadie and I both adored — ever sent to the principal’s office. A few days later Mrs. Stapp pulled me aside at pick-up time. She said she wanted the school evaluation team to do a thorough assessment of Sadie (I’ve changed her name to protect her identity), including a battery of psychological tests. I almost hugged her. By then, I felt as out of control as my daughter spinning on the playground: A mother who doesn’t know what’s wrong with her only child. Or how to help her.
I hadn’t always been open to suggestions that my precocious little girl might not be normal. When the director of Sadie’s first preschool, Mrs. Acheson, called me in to discuss my daughter’s behavior, I was more irritated than concerned. Shy and reserved myself, I’d always been in awe of Sadie’s utter lack of inhibition. From the time she was a toddler, she never hesitated to approach children she didn’t know at the park and ask if they wanted to play. One afternoon, I watched with pride as she marched between the monkey bars and swing set in her red cowboy boots, her hands cupped to her mouth.
“Who wants to go to Africa with me?” she bellowed. Within minutes, a half-dozen eager kids and a couple of chuckling grown-ups fell in line behind her. Like a mini Pied Piper, Sadie led them across the sand, halting in front of a big yellow and blue play structure that looked like a truck.
“OK — everyone get on board,” she ordered. “And just so you know, we’re stopping in Egypt for gas.”
At preschool, her animated tales of flying to Princess Land via the tire swing were so convincing, there was always a line of girls begging to join her. And her spontaneous dance recitals in front of the fountain at our neighborhood mall stopped harried shoppers in their tracks and made them smile.
Mrs. Acheson, however, gave me an earful about my daughter’s less endearing traits: she struggled more than even the most fidgety boys to sit still at circle time. In the nap room, she kept the other kids from resting with her constant chatter. And though her lucid imagination and devilish sense of humor made her popular among her peers, she was also known to lash out at them when they didn’t play by her rules.
As our meeting ended, Mrs. Acheson advised me to get Sadie tested for ADHD. My cheeks burned.Seriously? A 3-year-old? You’ve got to be kidding.
I’d read and heard plenty of stories about parents who rushed into labeling their kids with ADHD or some other disorder just because they were a little hard to handle or different. I wasn’t one of them.
“What a control freak,” my husband, Jim, snorted when I told him about the meeting that night.
A few days later, I took Sadie to her pediatrician for a check-up. The doctor was equally dismissive when I told her what Mrs. Acheson had said.
“That’s absurd,” she laughed, shaking her head and tickling Sadie’s belly. “It’s totally normal for children this age to be impulsive. They all develop and mature at different rates.”
I left her office feeling vindicated.
Guerilla glue and grief
But by the time we moved from San Diego to the Bay Area when Sadie was 4, I’d come to dread the sound of my cell phone buzzing. More often than not, I’d answer it to hear an exasperated teacher or camp counselor complaining about Sadie’s antics. Or telling me I needed to come and pick her up. Now. She almost got kicked out of her first summer camp for locking herself and a fellow camper in a bathroom.
My hopes that Sadie would outgrow her problems — or that I’d discover the secret to getting her to behave in the stack of parenting books on my nightstand — was starting to fade. Although she’d have spells when she seemed fine, sooner or later I’d get another call.
Even more disturbing were symptoms she began to exhibit after our move. Several months after she’d been at her new preschool, my social butterfly suddenly balked at participating in the morning sing-along that started each day. Instead of racing to join her friends the way she used to, she’d cling to my legs or dart away like a feral cat to hide under a table.
Sometimes she talked so fast it reminded me of how my old vinyl records sounded when I played them at the wrong speed, her mouth frantically chasing words in her mind, but never quite catching them. And then there was her growing preoccupation with death. She’d work herself into a frenzy that a piece of candy she’d found on the ground and eaten years earlier was going to kill her.
“I don’t want to die!” she’d wail. Just driving by oleander bushes or firethorn shrubs with their toxic red berries could send her into a panic. After a boy at school told her Guerilla Glue was poisonous, she refused to set foot in any store where it might be sold.
During our meeting to review the results of Sadie’s evaluation, the school psychologist said Sadie scored high on portions of the test related to ADHD.
“But these could also be symptoms of something else,” she warned. “And ADHD doesn’t explain some of her behavior. You should talk to her pediatrician about getting a psychiatric evaluation.”
At home, I fought back tears as I read the full report. Sadie’s teacher noted that she veered from excessive silliness one minute to excessive rage the next. She was known as the “weird girl” and “the naughty girl” for her habit of blurting out random remarks. Both her teacher and the school counselor checked boxes for “severe” in response to questions related to Sadie’s risk for depression, anxiety, and atypical behavior. But it was reading what Sadie said about herself that hit me like a punch in the gut: “I feel sad most of the time.” “Nobody likes me.” “I’m a bad person.
A few weeks later, I followed Dr. Olson, a child psychiatrist, into his office. After multiple sessions of being grilled about my daughter’s behavior, I was about to find out what was wrong with her. I held my breath as he picked up a manila folder with Sadie’s name on the tab and opened it. The room felt like it was spinning. Based on reports of her behavior, our family history, and what he’d observed in Sadie, Dr. Olson believed she had early-onset bipolar disorder.
“Bipolar disorder?” I croaked. “Are you sure? What about ADHD?” Suddenly the earlier diagnosis didn’t seem so bad.
“I’m sorry,” he answered softly “I only diagnose one percent of the kids I see with bipolar disorder. And it’s very common for bipolar children to also have many ADHD symptoms.
Mental illness, including bipolar disorder, is as deeply embedded in the DNA of both my family and Jim’s as the genes for brown eyes. My brother was diagnosed with bipolar disorder when he was 19. Over the years, relatives afflicted with bipolar disorder from both sides of our family have attempted suicide.
And then there’s my dad. Bipolar is among the mental illnesses he’s been labeled with since he was a young man. A talented musician, during his up spells, he loved to throw hootenannies and jam and drink the night away. He was also prone to buying exotic cars on a whim. When he came crashing down, his latest toy was always deemed a piece of crap and sold for a fraction of what he’d paid for it. After my mother divorced him, Dad spiraled into a suicidal depression and checked himself into a mental hospital. I flashed to the day I’d visited him there as a teenager and found him slumped like a rag doll in a room with walls the color of pistachio ice cream, surrounded by a group of equally listless patients. Now in his eighties, his mood swings have mellowed with the help of medication and sobriety.
There had been a few instances, especially after reading an article in The New Yorker about bipolar disorder in children — the first time I’d ever heard of such a thing — that I wondered if Sadie could have it. Some of the characteristics the author attributed to bipolar kids sounded like Sadie: “early talkers,” “extremely precocious,” “disruptive behavior.” And I knew that bipolar disorder often has a genetic link. But the idea that Sadie could really have it was too terrifying for me to contemplate — I pushed the notion away whenever it surfaced. It was so much easier to side with mental health experts who doubted pediatric bipolar disorder existed at all.
Between 1990 — the year some psychiatrists first proposed the disease could occur in young kids — and 2000, diagnosis of children with bipolar shot up 40-fold. Medical journals began publishing articles focusing on bipolar children. A listserv for parents of bipolar children — started by a mother whose son was diagnosed when he was 8 — helped spread the word. In 1999, psychiatrist Demitri Papolos and his wife, Janice, wrote The Bipolar Child. For families that had been seeking answers to explain their children’s debilitating mood swings and suffering, The Bipolar Child was a godsend. Critics of the book accused parents of kids with relatively minor behavior problems of rushing to see unqualified doctors to get a bipolar diagnosis — and medication to make their children easier to control at home and in school.
While some experts regarded the recognition of pediatric bipolar disorder as a great breakthrough, others argued that like many recently “discovered” mental illnesses, it was just the latest diagnosis du jour. They claimed that too many kids were being over-medicated with potent drugs intended for adults.
Sitting in Dr. Olson’s office, whatever I thought I knew about childhood bipolar disorder disintegrated in the crushing weight of the moment. I tried to listen to what he was saying. Something about starting Sadie on a regimen of Depakote as soon as possible to stabilize her moods. I snapped to attention when he casually rattled off a list of side effects she could experience: weight gain, nausea, sluggishness, and — oh, yes — in rare cases, serious liver damage or pancreatitis.
As horrifying as these side effects sounded, I worried about other effects he didn’t mention — what if medication erased Sadie’s creativity?
I thought about all the times she’d raced into our house after school and headed straight for her art supplies, bursting with plans for a project.
“I’m going to make a book, Mama!” she announced, standing at the kitchen counter because she was too excited to sit, chattering happily as she rapidly filled page after page with an illustrated story about two little girls who lived inside flowers.
Would Cowie, the stuffy she brought to life with a distinctive Scottish brogue, stop talking? “Hey — did you know the milk for Sadie’s mom’s latte came from my udders?” Cowie once quipped to a stressed-out Starbucks barista as Sadie held the stuffy over the coffee counter. The barista grinned and visibly relaxed.
“Do you think she really has bipolar disorder?” I asked Jim that night after filling him in on my appointment with Dr. Olson.
“I don’t know,” he said. “You can tell her mind’s just zooming some times. But giving her medication scares the crap out of me.”
Later, unable to sleep, I went to the kitchen and turned on my computer. I forced myself to type the address of a website for families of children with pediatric bipolar disorder that Dr. Olson told me about. I clicked on a forum where parents discussed their bipolar kids and the medications they took. I felt queasy as I read about side effects of medication: the 9-year-old who packed on 20 pounds in three months, the kindergartner whose fits of anger escalated to murderous rages. Some of the posts were from mothers who’d been lucky enough to find a medication that worked. But many had tried drug after drug with no success.
I hated the cute acronyms they used: BP DD (Bipolar Darling Daughter) or DS (Darling Son). Even more disturbing was the way they signed their posts: their online names followed by the drugs their children were on and the dosages they took. There weren’t any signatures with just one medication. Most of them included a list of three, four, or more drugs.
I was nowhere near ready to join their club. I wanted to hold onto the belief that neither Sadie nor I qualified for membership.
A week later, Jim and I returned to Dr. Olson’s office. “You know, you can replace just about any body part these days,” Jim said, staring down the doctor. “But when your liver’s gone, that’s it — game over.”
Dr. Olson nodded. He understood our concerns but insisted that such serious side effects were very rare and could be prevented with careful monitoring.
“What about therapy alone?” I asked.
“Well, that’s always an option,” he replied. “But research shows that when you don’t intervene early with medication in a bipolar patient, the brain experiences what we call ‘kindling.’”
He explained how the first episodes of the illness are like the scraps of wood and paper needed to start a fire. Once that fire is blazing, you don’t need a trigger to spark future bipolar episodes. And they tend to be more intense and to occur more frequently over time.
As we got up to leave, Dr. Olson handed me a prescription. “It’s for the baseline blood work Sadie needs before she can start the Depakote,” he said. “If that’s what you decide.”
One afternoon while Sadie was in school, I watched The Medicated Child, a Frontline documentary about the huge rise in the number of children being diagnosed with bipolar disorder, and the corresponding increase in treatment with powerful psychiatric drugs intended for adults. The film featured Dr. Kiki Chang, a leading researcher in pediatric bipolar disorder at Stanford University, who believes bipolar disorder has always existed in children. He echoed what Dr. Olson told us about kindling and the urgency of controlling symptoms early, before the disorder becomes firmly established.
But all I could focus on were the children — a little boy who raged like a trapped wild animal, or the teenager whose face twitched uncontrollably from the assortment of drugs he’d been on since he was Sadie’s age. I felt like I was watching my future unfold.
Glancing up at the kitchen clock, I realized it was past time to pick up Sadie at school. I grabbed my purse off the counter and fished around for my keys. As I yanked them out, I noticed a corner of the prescription from Dr. Olson sticking out from my wallet. I dug out the wrinkled square of blue paper, crumpled it into a ball, and tossed it in the trashcan under the sink. I knew I wouldn’t be using it. We wouldn’t be going back to Dr. Olson.
One step forward…
Kirsten sounded warm and caring on the phone. I liked her even more when we met in her cozy office in a renovated Victorian in San Francisco. Sadie loved her new child psychologist. At the first appointment, my daughter’s face lit up when Kirsten showed her cabinets and drawers filled with toys and art supplies.
Twice a week, I strapped Sadie into her car seat and zipped across the Golden Gate Bridge to Kirsten’s office. With a summer’s worth of sessions under her belt, Sadie started first grade on a more even keel.
Most mornings, she donned her pink Super Sadie cape and skipped ahead of me to her classroom.
“Why are you wearing that thing?” a scowling little boy asked her one day.
“I’m Super Sadie!” she announced, ignoring the twitters of other kids.
I’d almost lulled myself into believing that therapy was working when I received an email from her teacher. Again it was the same story: Sadie had trouble focusing, no trouble disrupting class. She kept rolling her eyes back into her head, giggling for no reason, and pulling her hair.
For parents of kids with mental health issues, school is often their first reality check. Suddenly, your child is being evaluated from the perspective of the world outside your immediate family. Suddenly, the behavior that you’ve reassured yourself is within the realm of normalcy doesn’t look so normal anymore. At first, I’d resisted seeing what the teachers saw in my daughter’s behavior. Now that her symptoms had become more obvious, I felt only gratitude.
Sadie’s teacher and I agreed that Sadie should start seeing the school counselor on a regular basis. Still, Sadie’s behavior continued to deteriorate. She complained that she didn’t have any friends and didn’t want to go to school anymore because she was “too stupid.” She talked about wanting to hurt other kids or herself. When a girl accidentally pushed her in P.E. one day, she flew into a rage and threatened to “slap her in the face and kill her.”
Kirsten had also become a target of Sadie’s venom. Every time we drove across the bridge to see the therapist she once adored, it was a battle. She pummeled the back of my seat and threatened to jump out of the car as I struggled to keep us from careening into oncoming traffic. “I hate that stupid baby doctor,” she screamed “I’m going to kill her!”
At Kirsten’s office, it took the two of us to wrestle Sadie inside, kicking and shrieking.
Your mountain is waiting
One night, as we snuggled under her daisy-strewn quilt reading, Oh, The Places You’ll Go, Sadie’s lower lip started to quiver in a way that was becoming all too familiar.
“I don’t want to be on this planet anymore, Mama,” she choked in between sobs. “I think I’d be happier in heaven.”
I let the book drop to the floor and pulled her close, burying my face in her hair. I tried to soothe her but no matter what I said, or how tightly I held on, it felt like my little girl was slipping away.
When she finally drifted off to sleep, I crept into my room and climbed into bed. My mind bounced between my fears for Sadie to the mothers on the pediatric bipolar forum. With a pang of shame, I remembered how quick I’d been to judge them. I finally understood how it felt to be in their shoes. Like them, I was so desperate to ease my child’s pain, I was willing to try anything.
A new dance
A few days later, about eight months after Sadie had begun therapy, Jim and I met with Kirsten. No fan of medicating young children, she explained that there were some — like Sadie — who were dealing with such intense, scary thoughts, they needed medication to get stable enough to even benefit from therapy. On the back of a business card, she scribbled the name of a psychiatrist known for his careful approach to treating children. “He really helped turn things around for a little boy I work with who reminds me of Sadie,” she said. While cooking dinner that evening, I told Sadie about the new doctor who might give her some medicine to help her feel better. She leaped up from her chair at the kitchen table where she’d been coloring and hopped around the room.
“Will it fix my brain and stop me from being bad?” she asked, as excited as if I’d announced we were going to Disneyland.
I scooped her up in my arms, images churning through my mind. The jerks and tics of the boy in the Frontline documentary. Sadie downing a rainbow of pills each morning, her quirky spirit flat-lined by medication, her eyes dull and vacant. God, what am I doing? I heard her laughter ricocheting through our house the way it used to. I saw the long, solitary afternoons and weekends I scrambled to fill with projects suddenly packed with the play dates and birthday party invitations she craved. I even let myself imagine her walking across a sun-dappled college campus with a group of friends.
Sadie looked up at me, waiting for an answer. As we reeled around the kitchen together in a clumsy dance, I wished I could tell her what she wanted to hear. But I could only say what I knew. I didn’t know anything for sure. The only way we’d ever find out was to give it a try.