One diagnosis away from despair

A TERRIBLE rhythmic noise from the living room, like a dull saw in hard wood, woke me. 4:11 a.m. I thought it was our dog, being sick. I jumped up, hoping to get her outside before she puked. But the dog met me in the kitchen, agitated. It was my 16-year-old son, Benjamin. He lay on the couch and cried.

“Are you sick?” I asked. “What’s wrong?”

“I don’t know,” he replied. “I don’t know.”

He had not really been himself for a while, since 12th grade had started. He was always a quiet kid, but now he was silent. He had been a big reader, and he seemed to have given it up. He was home on Friday and Saturday nights. The phone didn’t ring. His friends didn’t call.

I sat beside him, unsure what to do. He looked up at me, his shoulder-length brown hair plastered to his wet cheeks.

“Mommy,” he said, the anguish in his voice unmistakable. “What’s wrong with me?”

I held his head in my lap. I helped him to bed, tucked him in and sat with him until he fell asleep. In the morning, he trudged out the door to school, huge circles under his eyes, backpack unopened from the day before.

I called the school. The principal also was his English teacher, and what she said shocked me: He hadn’t done any homework since school began; he slept in class or, if he was awake, looked out the window or down at his desk; he never took a note or made a comment. She had sent a letter home with him, but his dad and I had never seen it.

I thought it had to be physical. I took him to his pediatrician. He had lost 22 pounds in nine months. The doctor was worried that he was anorexic, but Benjamin assured her that he ate when and whatever he wanted; he just wasn’t hungry anymore.

I met with his teachers, and they all said the same thing: Benjamin wasn’t himself. I woke the next few nights to find him up watching TV at 2:30 or 3:30 or 4, all night. He told me through his tears that he was afraid to go to sleep, afraid to close his eyes because of all the sad things in his head.

Time for a therapist, I said. Time for something, anything to make you feel better. Even though I had read all the scary articles about mood-altering drugs and teenage suicide, I promised him that a psychiatrist could give him a pill and he would feel better in a few weeks. “I can’t wait that long,” he said. “I can’t stand this.”

My heart was breaking. We waited for our first therapy appointment, and I made him his favorite foods, bought him new books by his favorite authors, watched baseball with him. Nothing seemed to interest him. He constantly told me that he didn’t have any homework, which I knew wasn’t true, but his dad and I agreed school was the least of it. We would put no more pressure on him. I hid the college books and the brochures that were coming daily in the mail.

We first saw a psychologist recommended by Benjamin’s principal. He was warm and concerned. He met with Benjamin and me together, then just Benjamin, and then just me. When it was my turn, the doctor said it was obvious that Benjamin was deeply depressed. It was more than college worries. The psychologist was not an MD and therefore could not prescribe medication, but he gave us the name of a psychiatrist who could, and I made the first available appointment.

The psychiatrist was another nice man, young, in an attractive office in San Marino. He had questionnaires for us to fill out. One for my observations, a different one for Benjamin’s. Benjamin was honest. I was too.

My mother was hospitalized with a nervous breakdown when I was young, but after seeing a therapist she seemed fine. This interested the doctor a great deal. Never once did Benjamin say he had feelings of grandeur or superiority. He never felt like he couldn’t sit still. His mind didn’t race; instead, it felt as if he couldn’t think at all, as if it was filled with sludge.

When our 45 minutes was up, the young doctor looked at Benjamin and said: “You’re bipolar. It will only get worse over time unless we begin to medicate you now. I’m prescribing Abilify.”

“How long does he have to take this?” I asked.

“The rest of his life. Bipolar is a lifetime diagnosis.” He opened a cupboard in his office and gave us free samples. He wrote out a prescription. He explained that Benjamin had not yet had a manic episode -- the opposite of his depression -- but he would, and we needed to avoid that at all costs. He mentioned some unlikely side effects to the drug and that he’d see us in six months.

I was so relieved I almost cried. Benjamin seemed optimistic too. We knew what was wrong and what to do about it. My husband was traveling for business. I called him and crowed into the phone, “Benjamin’s bipolar! He takes this pill and then he’ll be fine.” Looking back, I realize how desperate we were: a lifetime diagnosis of mental illness made us happy.

Benjamin was supposed to start taking Abilify the next day. I looked at the packages. The list of side effects was confusing, and I couldn’t remember exactly what the doctor had said, so I did a Google search for Abilify. What I found terrified me. Every website I visited said clearly, “Abilify has not been tested in children or teenagers.” Benjamin had been on his computer too. The websites said not to exercise strenuously in the heat while on the medication, and he was worried about football practice, the only thing he still enjoyed. My husband called from his hotel. He’d been doing some research of his own. We all agreed: Abilify was a serious drug, and a 45-minute session that led to a lifetime prescription seemed absurd.

Although Benjamin had not wanted his friends or family to know of his problem, I called my cousin, a psychiatrist at Beth Israel Hospital in New York. He exploded on the phone. It was a ridiculous diagnosis, he ranted, impossible after one office visit, especially for a teenager with no prior history. And, he reminded me, the guy who finished at the bottom of his class in med school is out there practicing, same as the student who finished at the very top.

My cousin said that Abilify could be a wonderful drug for the right patient. But it wasn’t indicated here because Benjamin was so young and had never had a manic episode. If he were depressed and not bipolar, then Abilify could make him drowsy and lethargic. In other words, he would feel worse. My cousin was adamant -- do not start the Abilify and find a second opinion. He gave me the names of the best doctors he knew in town.

Even using my cousin’s name, it took days on the phone, telling the story, asking questions, begging to be seen. Luckily, I had the time and the resources to make hundreds of phone calls to find another doctor. Finally, after bursting into tears with the assistant at the UCLA Pediatric Neuropsychiatry Clinic, I got the name of a doctor who might have time to see Benjamin. Thank God he did.

He was not against prescribing medication, but he thought talk therapy should happen first. Once a week, 50 minutes a session. Benjamin never complained about going, and he was totally uncommunicative about what they talked about. But slowly, slowly, he began to feel better. He slept more, he ate, he called his friends, he smiled at me. He never took any kind of drug; his doctor never thought it necessary.

According to a 1998 California Institute for Mental Health study, one in every eight adolescents suffers from depression. Suicide is the third-leading cause of death for those ages 15 to 24. As parents, we will do anything to help our children, to keep them from pain, to make them feel better. But we also are at the mercy of professionals. Ten years ago, my cousin told me, the pediatric diagnosis du jour was ADHD -- attention deficit hyperactivity disorder. Now it’s bipolar disease (is it a coincidence that two leading pharmaceutical companies have released bipolar drugs in the last decade?).

In May 2005, Dr. Jennifer Harris, a clinical instructor at Harvard Medical School, published an article in the Journal of the American Psychiatric Assn. that refuted much of the evidence that juvenile bipolar disease is as widespread as currently believed. She concluded: “Diagnoses for children are generally far less precise and meaningful than they are for adults. We should discuss our uncertainties with our patients and their families, particularly when bipolar disorder is being considered.”

Our story has a happy ending. Benjamin is in his second month of college on the East Coast. He’s gained 10 pounds. Aside from some homesickness, he sounds great.

Had Benjamin taken the Abilify, I don’t know where he’d be right now. But I don’t think we’d have that happy ending, and I don’t think he’d know that he has a tendency toward depression, nor would he have learned some tools to help him fight it.

Anything could happen. Benjamin may, at some point in his life, need a drug to help stabilize him, to give him some support. But for now, I’m glad I didn’t believe the first thing I heard, and that the side effects for Abilify were so scary that I asked for help. My son is healthy, and I know how lucky we are.