By CAROLYN ABRAHAM
Saturday, October 19, 2002
– Page A1
Canadian parents are flying to California with their autistic children to see a doctor who doesn't believe their children have autism at all, but a smouldering brain virus producing symptoms that look just like the disorder.
With the growing sense that autism is spreading like flu as numbers rise in industrialized countries, the viral theory -- both controversial and unproven -- is gaining interest, even among the mainstream medical community.
While doctors worry that desperation makes parents vulnerable to fraud and quackery, most can't help but wonder if there could indeed be a link between infections and autism, once viewed as a rare developmental disorder by the medical community.
Now Canadian doctors, on the urging of parents, are considering conducting a clinical trial of the complex antiviral therapy that the California doctor prescribes in conjunction with special diets.
"We have 40 families ready and set to go for the study," said Doug McCreary, who lives near Orangeville, Ont.
The McCrearys, whose youngest son, Matthew, has been on the therapy since May, are one of 24 Canadian families already registered with Dr. Michael Goldberg, whose office is based in the outskirts of Los Angeles.
Researchers at one of Ontario's university hospitals are now in talks with Dr. Goldberg, but until they formally decide to conduct the trial, they have asked not to be named, Mr. McCreary said. He has noted small, but significant, improvements in the five months his four-year-old son has undergone the therapy.
Parents have become a powerful driving force in recent autism research efforts. After all, nearly 60 years after it was identified, autism remains one of medicine's great mysteries, with no known cause, effective treatment or cure.
Speculation swirls around possible culprits: food allergies, vaccinations, mercury exposure, and without doubt, genes, perhaps those that encode both physiological and personality traits.
Autism, which hits boys four times as often as girls and which covers a spectrum of disorders, is marked by profound social disabilities. Those severely affected can't talk, make eye contact or return something as simple as a smile.
Estimates today suggest classic autism has increased fivefold in three decades, affecting 20 in 10,000, and as many as one in 300 may have an autistic disorder.
As a result, Dr. Goldberg's theories of a viral culprit exploiting children who are genetically susceptible has caught on with several parents.
"Science tells us that an epidemic, which this is, cannot be due to a genetic or developmental disorder," said Dr. Goldberg, who describes himself as being too impatient for mainstream medicine's long process of moving new treatments from labs to clinics.
Educated at the University of California medical school in Los Angeles, Dr. Goldberg believes people have become increasingly susceptible to certain immune-system disorders. He points to rising rates of ear infections, asthma and food allergies.
This, he suspects, is a product of defying Darwin: "Human beings are the only species to go against survival of the fittest." People increasingly choose mates on the basis of brains, not brawn, he says, passing on genes that predispose to immune-system weaknesses.
"Then you add to that a trigger, by some illness or infection," he says, and the combination in these children produces symptoms resembling autism.
Dr. Goldberg has focused, in part, on the role of the Herpes 6 virus, a common infection nearly all preschoolers pick up. If the immune system is weakened, Dr. Goldberg's theorizes, a child's body turns on itself and the virus heads to the brain, where it takes up long-term, low-grade residence.
He calls it the NIDS Hypothesis, short for neuro-immune dysfunction syndromes.
Dr. Goldberg, who works with researchers at the University of California at San Francisco, says brain scans of these children show lack of blood flow to the brain's temporal region, which is involved in language processing. It is also the site of the amygdala, important to both social and emotional behaviour.
Blood tests of children he treats show abnormally high numbers of viral antibodies, Dr. Goldberg says. This suggests an exaggerated immune response, or evidence of continued infection.
"If we catch these kids early enough, they can recover from this," Dr. Goldberg said. "Most of them started out normal and healthy."
Like any child, the McCrearys' son Matthew began as a toddler to blurt out words such as cookie, bottle and motorcycle, especially as parades of bikes whizzed past their country house.
Then slowly, he fell silent, withdrawn, losing "even a flicker of eye contact," Mr. McCreary said.
"When 10 Harleys went by the house, he wouldn't even look up. It was like having our child kidnapped in front of our eyes."
They called Dr. Goldberg last August, but had to wait until this past spring for an appointment.
Matthew is now on a regimen of antiviral, antifungal and antidepressant drugs indefinitely. He sticks to a gluten-free and dairy-free diet, in the hope that this can alleviate the gastrointestinal troubles common in children diagnosed with autism.
But pediatrician Lonnie Zwaiganbaum, at McMaster University and Hamilton Health Sciences Centre, cautions, "What's the end point; are these drugs the kids stay on for the rest of their lives? What are the long-term effects; does anyone know? I worry, not because the treatment is unconventional, but because it's unproven."
Mr. McCreary estimates that for the drugs, regular blood work and long-distance phone calls with Dr. Goldberg, the therapy costs about $5,000 Canadian a year.
"Already for us," he said, "it's been worth it."
Matthew now sleeps through the night and responds to his name, and the chronic diarrhea has stopped. "In our world, those are big things," said Mr. McCreary, whose second son, Michael, has high-functioning autism, or Asperger's syndrome.
"We know this won't work for every child; that's not the way autism works. But the blood tests [looking for the viral traces] should be standard therapy." Mr. McCreary now is head of a fledgling group, NIDS Canada.
|
Headline Index
