Copyright 1994 Bergen Record Corp.
DISABLED FAMILY FIGHTS BACKBy CHRISTOPHER KILBOURNE
It was only spilled milk, but Barbara D'Agostino had good reason to cry.
Muscles that were too weak to hold on to a half-gallon container were another sign that the Lyndhurst resident was falling victim to the mysterious ailment that ultimately rendered her mother a quadriplegic and seriously weakened her older brother, Nutley attorney James A. Fox.
The pool of milk spreading across the kitchen floor on that summer morning in 1989 showed D'Agostino that she was reaching the point where she could no longer take care of her learning-disabled little boy by herself.
The tears born of fear and frustration would return in the months to come as she desperately searched for someone who could identify and treat the malady afflicting her family.
"I would cry in front of those doctors and beg them to help us," D'Agostino said.
The breakthrough came in January 1990, when D'Agostino's mother, Helen Fox of Lyndhurst, was diagnosed with eosinophilia myalgia syndrome, or EMS, a painful and often crippling disorder that can cause fever, swelling, sudden weight gain, severe muscle pain, paralysis, and -- in some cases -- death.
Researchers had just linked EMS to L-tryptophan, a "miracle" dietary supplement that was being used for everything from building bigger bodies to treating insomnia, stress, depression, and premenstrual syndrome.
Helen Fox, now 67, had been taking L-tryptophan since the mid-1980s, when her doctor prescribed the over-the-counter product to help her sleep, she said. She shared the pills with James Fox, now 43, and D'Agostino, now 42, who started taking them in 1988.
In November 1989, the U.S. Food and Drug Administration first warned consumers about the risks associated with the product. The FDA ordered L-tryptophan recalled from stores a week later and again in March 1990.
The EMS outbreak has resulted in a rash of lawsuits against the Japanese and American companies that peddled the product. The Centers for Disease Control in Atlanta reported that as of Dec. 1, there had been 1,510 confirmed cases of EMS in the United States, including 38 fatalities. Those figures include 28 cases in New Jersey, 16 in Connecticut, 52 in Pennsylvania, and 153 in New York.
Lawyers estimate that about 1,700 L-tryptophan lawsuits have been filed, including 500 federal cases consolidated for pretrial proceedings before a federal judge in Charleston, S.C.
The CDC's statistics are disputed by Thomas D. Rogers, a Charleston lawyer helping coordinate the federal cases, and Philadephia attorney Stephen Sheller, who is at the forefront of state-court L-tryptophan litigation. They said data compiled by EMS support groups show at least 5,000 cases and more than 50 deaths caused by the pill.
A flood of L-tryptophan lawsuits poured into courts recently as lawyers rushed to file claims before the second anniversary of the FDA warning, a date some contend triggered the two-year statute of limitations on personal injury suits in many states.
Among the dozen L-tryptophan lawsuits pending in federal court in Newark are two filed last month by James Fox on behalf of his sister and himself. In September, James Fox helped settle his mother's claims against Showa Denko K.K., the Japanese chemical company which allegedly manufactured contaminated batches of L-tryptophan that caused the illnesses.
A spokesman for Showa Denko said the company would not comment on specific cases, but acknowledged a "statistical association" between EMS and certain of the company's production runs of L-tryptophan. The company has spent more than $2 million to find the cause of EMS and is aiding victims who cannot pay their medical costs, said spokesman Bob Schwadron. He said Showa Denko also is funding the EMS hot line and registry: 1-(800) EMS-2829.
Helen Fox got money from Showa Denko's medical-care fund, but she made it clear during a recent interview that she felt pressured into taking the settlement, the terms of which are secret.
"They know that time is in their favor," she said. "You settle because you've got to do something. You've got to go on living."
After diagnosis in January 1990, Helen Fox's condition continued to deteriorate until the formerly active real estate agent could barely hobble around her home.
"I remember once being in the hall and not being able to get up the stairs," she said. "I remember just screaming and screaming and screaming."
By the time she was admitted to New York's Lenox Hill Hospital in February 1990, Helen Fox was quadriplegic. "I couldn't even scratch my nose," she said. Now, after 14 months of hospitalization and six months of outpatient therapy, she can use her arms and can walk short distances around her home. She still needs a wheelchair to travel outside of her home, and the pain may never leave.
Meanwhile, D'Agostino was watching her own life and health slowly unravel. What started as severe facial pain and muscle spasms evolved into joint pains and loss of balance and strength, she said. As her condition worsened, she had to leave her job as a personnel consultant and hire a daytime sitter to help with J.D., her 4-year-old son, who has epilepsy.
"I was not able to care for him," she said. "I couldn't run after him or pick up a pot of boiling water to cook for him."
D'Agostino, whose husband is a meat-cutter supervisor in Bloomfield, could ill afford the loss of her income, much less the expenses of a sitter and the uncovered portion of her mother's medical bills. She said her family would have had to sell its house and file for bankruptcy if she had not recently been able to borrow some money.
Money James Fox had saved from six years of practicing law, to ease his transition into his own practice, paid for his mother's hospital bills of up to $5,500 a week.
James Fox said he has a milder case of EMS but suffered such symptoms as concentration problems, excessive sweating, sudden weight gain, and unexplained swelling in his hands. the lawsuits and put its trust in the legal system.
None of the suits against Showa Denko has gone to trial, but the company has started settling claims, said Rogers. Four lawsuits arbitrated recently in Oregon resulted in the distribution of $2.2 million among four plaintiffs.
Some analysts have expressed doubts about Showa Denko's ability and willingness to pay claims now estimated at well over $1 billion. Sheller, the Philadelphia attorney, said it also is unclear whether judgments against the company obtained in American courts would be enforced, if necessary, by Japanese courts.
Whatever the outcome of the L-tryptophan litigation, Helen Fox said she and her son and daughter are better off now than they were a year ago. "We know now what we have, and what we have to deal with," she said. "It's a damn sight better than what we had before, but it's not a pretty picture."