I refused to give up on my daughter
"I refused to give up on my daughter"
Once a normal, cheerful teen, Michelle changed very suddenly. So began a long medical nightmare that ended only when her mother solved the mystery ... and saved her child's life.
By Lisa Colier Cool
Lisa Van Syckel saw the flashing lights first, then the police cars - four of them, all clustered in front of her house. Trying to stay calm, she pulled into the driveway, where she saw her husband, Bill, showing a photo to several grim-faced officers. Jumping from the car, she ran to him. "Fifteen years old," he was telling the police. "Long blond hair. Slender building. Dressed in jeans and blue T-shirt ... ."
Michelle, Bill was describing Michelle, their daughter. "What's wrong?" Lisa screamed. "Where is she?"
No one knew. Minutes earlier - while Bill was on his way home from work and Lisa was out running a quick errand - Michelle had tried to kill herself. Their 12-year old son, Christopher, had heard his sister scream. He ran up to her room, getting there just as she was about to gulp down a handful of pills. Big and strong for his age, the sixth grader tackled Michelle, then grabbed her bedside phone and frantically dialed 911. But as he was shouting for help, Michelle broke free, slammed Christopher's head into a wall, and ran out the back door.
Hearing this, Lisa cried so hard she could hardly understand the officer. This was Michelle's third suicide attempt in eight days. "The cop kept saying not to worry, they'd find Michelle," she remembers. "But all I could think was, would they find her dead or alive?"
As Lisa raced inside and swept Christopher into her arms, the phone rang. It was one of her daughter's friends; she'd just gotten a hysterical call from Michelle, who had contacted her from a pay phone at a nearby restaurant. The police immediately set off, with Lisa following in her own car while Bill stayed home to comfort their son.
When they got to the restaurant, they saw Michelle crouched outside by the phone booth. But before they could reach her, she fled, running across the railroad tracks. It took three officers to catch her. Even then, she broke out of the handcuffs twice and was biting, hitting, and spitting at the men. When they finally got her into the squad car, she shrieked obscenities and tried to kick out the window. Police took Michelle to a hospital, where, after a furious struggle, she was placed in restraints, then sedated and discharged. Two days later, on October 8, 2000, she was admitted to the adolescent psychiatric ward of University Behavioral HealthCare, in Piscataway, an affiliate of the University of Medicine and Dentistry of New Jersey. There, doctors would wrestle with the question that had been troubling Lisa and Bill for almost a year: What was wrong with Michelle?
Growing up, their daughter had been a normal, cheerful girl who consistently made the honor roll. Then, in 1995, Bill's company transferred him to Europe. overseas, Michelle developed some problems, including in 1997, a bout of bulimia, which lasted six months. She recovered, but two years later, when the family moved back to the United States, to Raritan Township, New Jersey, the changed seemed to hit the teen hard. Michelle had trouble concentrating on her schoolwork, and while she was once popular, she now had few friends. In April 2000, she started complaining of dizziness, chest pain, and shortness of breath. When her weight suddenly dropped from her usual 138 pounds to 188, Lisa and Bill took her to Somerset Medical Center, in Somerville, New Jersey. Doctors here diagnosed depression and anorexia, then admitted her to the eating disorders unit.
During her two-week stay, Michelle was put on Zoloft. She developed new symptoms: a show heartbeat and sudden changes in blood pressure. Joseph Donnellan, M.D., the psychiatrist treating the teen, upped her dosage and diagnosed her with a "personality disorder not otherwise specified." (Through his lawyer, Dr. Donnellan denies there was anything improper about his care of Michelle. A spokesperson for Somerset Medical Center declined to comment.)
Looking back, Lisa says the diagnosis didn't sound right to her: "A personality disorder seemed so extreme." Growing more and more upset, she describes the harrowing period that followed: a second stay in the eating disorders unit three weeks after the first. More doctors. More treatments. And a switch from Zoloft to Paxil, another antidepressant.
That was the beginning of Michelle's downward spiral, say her parents. Over the next few months, the girl became very agitated. Then Lisa found knives hidden in Michelle's dresser and learned she was scratching and cutting herself. "I couldn't't believe it," says Lisa. "This was someone who cried if she got a paper cut." Lisa stashed away all the sharp objects in the house and started sleeping in the hallway outside her daughter's room at night.
The Van Syckels also repeatedly consulted Dr. Donnellan, who increased Michelle's dosage of Paxil. It didn't't help. Not only was she plagued by a growing list of physical symptoms, says Lisa, but by fall Michelle's self-mutilation was much worse. On September 28, 2000, days before her rampage, she was hospitalized after slashing her body with a razor more than 25 times. And she'd scratched a single, ominous word onto her belly: DIE.
After Michelle's suicide attempt on October 6, Ileana Bernal,, M.D., one of the psychiatrists treating the teen at University Behavioral HealthCare, took her off Paxil. Within a few days, Michelle became violent, pulling children's paintings off the wall and using the staples to slash her skin. (Dr. Bernal, who is now associated with another facility, declined to comment, saying she treated Michelle only "very briefly.")
At this point, Michelle had received enough diagnoses to fill a psychiatric textbook: anorexia, major depression, obsessive-compulsive disorder, and borderline personality features - a serious mental illness than causes distorted thinking, self-injury, and recurrent suicidal gestures. And doctors had prescribed a host of drugs, including, at various times, Celexa, Risperdal, and Depakote, in addition to the Zoloft and Paxil.
"Nothing made sense," says Bill, a 47-year old executive with a soft voice. "The more the doctors treated Michelle, the more terrible her problems became." In a very short time, he notes, she'd been in several different hospitals and had become impossible to live with. "We were afraid to say anything to her, because she might explode."
Therapists, however, seemed to have little problem blaming the Van Syckels themselves for their daughter's illness. Lisa was accused of being an "overbearing" mother. And in a way she was, Lisa agrees. Angry that Michelle wasn't getting better, Lisa pushed the doctors for solutions. "I demanded answers, because I refused to give up on Michelle."
But what really burned Lisa was the theory put forth by one social worker. "She said that in a teen, borderline personality was usually brought on by sexual abuse." Looking both fierce and protective, Lisa states, "Bill is a terrific father. I was furious that he had to deny such a monstrous accusation."
Who knows how long Michelle would have continued in this maze of diagnoses and drugs if it hadn't been for a chance conversation between the Van Syckels and an old friend. He was very ill, he told them, due to a recurrence of Lyme disease. Initially, like others who've had this tick-borne infection, the friend had had a rash, along with a fever and aching muscles. He thought he'd recovered, but then months later, he had developed severe fatigue, depression, and loss of appetite.
Those symptoms clicked with Lisa. In 1993, Michelle had been diagnosed with Lyme disease - something her parents had mentioned to various doctors. The illness had seemed to clear up after a round of antibiotics. But now that Lisa knew it could come back, she again asked Drs. Donnellan and Bernal if that might explain Michelle's problems. As she recalls the conversations, both psychiatrists scoffed. "Dr. Donnellan told me I was grasping at straws. Dr. Bernal said I must be in deep denial - my daughter didn't have Lyme disease, she was mentally ill."
But Lisa couldn't let go of the idea. She researched the condition, ultimately learning of a specialist, Andrea Gaito, M.D., president of International Lyme and Associated Diseases Society, who had published studies on psychiatric and neurological symptoms brought on by chronic Lyme disease.
When the family consulted Dr. Gaito, who practices in New Jersey, tests showed that Michelle actually had two tick-related infections. The teen had not only Lyme disease but also Bartonella, whose symptoms include brain inflammation and, in some cases, impaired thinking. A single tick can carry both diseases.
"Michelle was not mentally ill," reports Dr. Gaito. But Lyme disease can be tricky to diagnose, the doctor explains. It doesn't always show up in lab tests, and it causes extremely variable symptoms, including psychiatric conditions like depression or panic attacks. Dr. Gaito says that she sees a lot of teenage patients who were initially though to have other conditions. "But this was an extreme case," she adds. "I was shocked that such a young girl had been placed on such an incredible variety of drugs."
After Dr. Gaito's diagnosis of neuropsychiatric Lyme disease, Michelle went off all drugs and was treated instead with intravenous antibiotics. Gradually, she started to feel better, and now she's like a new person.
Today Michelle has little memory of the months when she was so violent. But concealed under her long-sleeved shirt and snug blue jeans are scars from her suicide attempts and self-inflicted injuries - problems her parents contend results from treatment with Paxil and similar drugs. They have filed a lawsuit against Dr. Donnellan, Dr. Bernal, another psychiatrist, a medical doctor, five hospitals and GlaxoSmith-Kline, manufacturers of Paxil. (Dr. Donnellan's lawyers have filed a response denying these allegations; Dr. Bernal said she was unaware of the lawsuit. Glaxo-SmithKline did not return GH's call.)
Michelle is bitter. "Doctor's don't listen to you or look far enough," she says. "They just give you medicine." A minute later, she smiles shyly as she shows off her report card. "When I was sick, I failed a bunch of classes," she says. "Now, look - all A's and B's!" It is spring of her senior year, and she reports, excitedly, that she will be attending the University of Hartford, in Connecticut.
Now Michelle is ready to head out so a shoe sale. But before she goes, she wants to say one more thing. "You know, I used to want everything to end," she says. "Now I'm thinking about college - and the future.