Sample text for Healing the new childhood epidemics : autism, ADHD, asthma, and allergies : the groundbreaking program for the 4-A disorders / by Kenneth Bock and Cameron Stauth ; special contributions by Korri Fink.
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New Haven, Connecticut
It was the most ordinary of family moments. the baby was just starting to talk, and Mom wanted a video of it.
Lynne Avram handed the video camera to her husband, and he started shooting the playful interactions between Lynne and the baby—chubby little Paul, with his bright eyes beaming–focusing almost entirely on his son, instead of his wife, as new fathers are prone to do. To him, and to Lynne, too, the baby—and every ordinary thing the baby did—was absolutely unprecedented. It was as if no child had ever before taken so majestic a first step, or burped so remarkably.
Dad narrated as he filmed. “This is the day before Paul’s very first birthday,” he said, getting a close-up of gleeful Paul, tottering around barefoot in his red-striped shirt. “Can you say hi, Paul?”
“Ha-ee! Ha-ee!” Paul responded, waving at the camera.
“Hi, sweetie!” said Lynne. “Hi-hi!”
Paul grinned at Lynne, and his face was lit with love, easy to read, in that striking nonverbal way that toddlers have of telling the world how they feel.
“Ha-ee, da-duh!” said Paul.
“Can you say, ‘Hi mama?’ ” Lynne asked.
Paul gazed happily at his mother, and brushed at his nose. His nose was a little runny. It had been runny for several days. Lately, he was picking up every cold that came around.
“Pauly,” said Lynne, “can you say ma-ma? Ma-ma?”
“You think this is pretty funny, huh?” Lynne said, laughing.
“Uh-uh!” said Paul, shaking his head emphatically. “Uh-uh!”
What a unique child! What an extraordinary family moment!
Truth be told, of course, it was all quite ordinary.
In the years to come, though, Lynne and her husband would watch this video many times.
It was a video of one of their last ordinary family moments.
Paul’s runny nose lingered for several days. Then he started to get better, but caught something else. Paul seemed to have a bad case of the common malady that parents call the day-care flu—catching every germ in town—even though Paul stayed at home with Lynne.
Paul, in fact, still had his cold on the day he was due for his next- to-last round of immunizations, at fourteen months. He needed a measles-mumps-rubella shot, and a booster to protect him against a form of meningitis.
Just before the appointment, Lynne called Paul’s doctor and asked if it was safe to give vaccines to kids when they were sick. The doctor told her not to worry—it happened all the time. If parents waited for perfect health in their toddlers, he said, the kids would never get all their shots. These days, he said, there were more shots than ever, and they were all important. Whole epidemics had been wiped out!
But Lynne still felt uneasy. Jittery. Couldn’t shake it. She was a registered nurse at a prominent hospital near the Yale University campus, and it seemed to her that it went against medical common sense to provoke a powerful immune response in a child whose immune system was already battered by illness. But she told herself that her fear was just garden-variety parental paranoia. After all, she worked with some of the finest physicians in America, and she had a flint- hard faith in their expertise. As a nurse in one of the world’s best coronary intensive care units, she regularly saw doctors snatch patients’ lives back from the shadow of death. They worked miracles.
So Paul got his shots, and everything was back to normal. Lynne and Paul went home and played. Later, Lynne made dinner for her husband, Wesley—who was a Communications professor at Yale Divinity School— even though she was exhausted. Getting simple chores done was tough with a baby in the house. But she knew it wouldn’t last. Kids grow up. Easier times were ahead.
Over the next few days, though, Paul’s nose and eyes grew disturbingly red, against his now ghostly skin. Dark circles began to droop under his inflamed eyes. Patches of scaly skin grew on his soft face. He no longer wanted to play. He was always tired and congested, irritable—not himself. Lynne told herself that she would have to wait a little longer for the easier days.
One evening, a couple of weeks after the immunizations, while waiting for Paul’s latest bout with a cold-bug to end, Lynne took him to the window and started to play a familiar game, in which she would point at something and say, “I see a tree”—prompting Paul to repeat “tree.”
“I see grass,” she said. But Paul didn’t seem interested.
“I see the sky.” No response.
“I see car-car. Car-car!” Nothing.
Paul was changing. Lynne didn’t want to believe it, but it was undeniable. The changes, frighteningly, did not seem to be just predictable responses to pervasive symptoms of colds and flu. Paul’s whole personality was changing. More precisely, it was just evaporating. His trademark mannerisms, his unique facial expressions, his words, his eye contact, his hugs and kisses, his lopsided grin: gone. His playfulness was gone. His child’s joy was gone. Replaced by nothing.
Paul couldn’t sleep through the night. He woke up screaming. His digestion and elimination suddenly soured, as if his belly were now filled with a wet, noxious mix of food and poison. It soaked his diapers and burned little lesions into his bottom, no matter how often Lynne changed him. His new nickname was Poopy Pauly.
He started to suffer from almost constant ear infections. The pain and the crying never seemed to let up. Wesley and Lynne took the relatively drastic step of having plastic tubes inserted into Paul’s ears to drain the congestion, but the infections just shifted to other areas, including his throat, lungs, and buttocks.
Instead of playing with his toys, Poopy Pauly started rambling around the house in a strange state of stupor that was punctuated by sudden meltdowns. He ignored everyone. Nothing penetrated—not love, not a raised voice, not constant attention. As Paul stumbled around the house, he would often bruise himself, but he didn’t seem to notice. Lynne could only follow in his wake, cleaning up his messes and keeping him safe.
Sometimes Paul drifted into what seemed to be his own mental purgatory, standing for hours in front of a running faucet on his spindly, weak legs, mesmerized by the water, acting almost as if he were high on drugs. Lynne and Wesley began to alternate on what they called Paul Duty. One would work or do chores while the other was on Paul Duty, then they’d switch, fall into bed, and wait for Paul to wake up screaming. Another month crept by, then another.
Lynne made a video approximately eight weeks after Paul’s immunizations, and it portrayed a child who was vastly different from the child in Paul’s first-birthday video. In the new video, Lynne coaxed Paul to interact, but he just sat mutely on the floor, drooling and wooden, his eyes vacant. At one point in the video, Wesley entered the room and said, “Hi, Paul.” But his voice sounded very different in this video. He spoke to Paul in a sad monotone, as if he expected no reply, the way one might speak to a person in a coma. After that, there weren’t many more videos.
Summer came and went, as Lynne embarked on a pilgrimage to the medical world. But no doctor offered a diagnosis or proposed a treatment. None would even confirm Lynne’s certainty that something dreadful was happening, and that her child should not be trying to drink from the toilet, or eat dryer lint, or chew on electrical cords, or play with his own dirty diapers, or smash his head into mirrors. She was told that kids developed at different paces. She was told that toddlers were a handful. She discovered that the medical world was much different for the patient than it was for the professional.
A year somehow crawled past, with Lynne constantly searching for signs of improvement, but never finding any. Family outings dwindled to trips to just one playground, which had a high enough fence to keep Poopy Pauly, still in diapers, safe.
After another exhausting summer, the holidays came. Theoretically. But there was no way to have a holiday in the Avram home. At Halloween, Paul—almost three now—was completely oblivious to the costumes and candy. Kids would come to the door and he wouldn’t even look up, so Lynne turned off the lights. Thanksgiving dinner, of course, was completely impossible with Paul in the house, and at Christmas Paul just tore open everyone’s packages, with no interest whatsoever in their contents. Normal activities ceased. Bike rides? Not possible. The movies? No way. The mall? Out of the question. Church, where Wesley was the minister? No—Lynne and Paul sat outside on the curb. Play dates? With whom? Paul Duty didn’t consist of play dates.
Ordinary family life was over, practically before it had begun.
Then one night Wesley was channel-surfing and came across a scene of a child staring hypnotically at water running out of a faucet—like Paul! It was a segment on Cable News Network. The moment it was over, Wesley hurried to his computer, dialed-up the relatively new Internet, and typed in A-U-T-I-S-M.
“Lynne. You’ve gotta look at this! I think Paul has autism.”
Lynne vaguely recalled hearing about autism in nursing school. Back then, in the late 1980s and early 1990s, autism was considered a very rare mental disorder, not nearly common enough to merit much study. Lynne hadn’t heard about it since. None of Paul’s doctors had ever mentioned it.
Lynne sat next to Wesley and they paged through the painfully slow Internet.
When they finished, Lynne felt sick. The symptoms of autism applied to Paul. Uniformly. Why had no one mentioned this?
Autism: incurable. Cause unknown. No medical treatments. Inability to communicate. Emotional sterility. Halfway houses. Institutionalization.
It was as if Paul, right then and there, had died. It was really that bad. Or—God help Paul—maybe even worse.
Lynne became, in her own words, The Crazy Mom. She began to confront doctors about why no medical treatments were available. They responded that some treatments actually were available, but that they were all psychological therapies, not biomedical treatments. Standard therapy consisted mostly of just behavior modification. Besides, the doctors said, Paul had not yet been formally diagnosed as autistic. That could not happen until he was slightly older, and by then he might outgrow his quirky behaviors, and learn to speak, look at people, and use the toilet. Remember, they said, Albert Einstein was a late bloomer!
What about the physical symptoms, Lynne asked—the digestive disorders, the diarrhea, the persistent eczema, the recurrent infections, the poor muscle tone? The doctors said that none of that was pertinent. Autism, they reiterated, was a psychiatric disorder, defined by behavioral characteristics. They assured Lynne, though, that she shouldn’t blame herself, because poor parenting had recently been ruled out as a cause. For many years, they said, doctors had thought that kids became autistic because their mothers were emotionally frigid—“refrigerator mothers,” in the psychiatric lexicon. In these more sophisticated times, they said, it had become apparent that autism was simply genetic, and therefore inevitable for a tiny percentage of children.
But if it were strictly genetic, Lynne argued, Paul would presumably have been born with some of its symptoms, when in fact he had been quite normal his first year. To which the doctors responded, in effect: No, he was never normal, but Crazy Moms who can’t handle the reality of this tragedy just see what they need to see.
One thing they did recommend was that Lynne carry a card, the size of a business card, that briefly explained autism, and could be handed to people in public situations when Paul went wild.
Lynne sometimes broached the subject of immunizations causing autism— which was mentioned on the Internet—but most doctors patiently explained that this theory was a myth, invented by distraught parents. Other doctors were quite condescending about the theory to Lynne, even though she was a medical professional who could speak their language. A few doctors, particularly pediatricians, got angry about it. Pediatricians administer most immunizations, and some of them seemed to take it personally when Lynne raised doubts. It’s not the shots, they insisted.
Then why, Lynne asked, did there now appear to be a virtual epidemic of autism—with rates soaring far beyond those of her nursing school years? And why did that epidemic appear to start right around 1991, when a whole new batch of vaccinations had been mandated? The answer was quite simple, most of the doctors replied. There was no epidemic. Just better diagnosis.
Their essential message was: Give up. Accept it. Move on. But Lynne kept swallowing her pride and plugging away. She and Wesley spent over $100,000 on behavioral and educational therapies, which decimated their finances, and did little good.
Then one day, through a network of parents who had autistic kids, Lynne heard about a dietary approach. It consisted of eliminating most grains, along with milk products.
It sounded rather simplistic to Lynne. But what did she have to lose? She tried it. A few days later she woke up—and it was morning. Paul had slept through the night.
The next day, while they were riding on a bus, Paul looked at Lynne— right in her eyes—and said, “I hungry.” He was there.
“Paul? What? Hungry?”
He was gone again.
Lynne turbocharged her efforts to find a medical treatment for autism, and discovered a nurse in New Jersey who knew more about the disease than anyone Lynne had ever met. “There’s a doctor you should consult,” the nurse said. “He’s in a little town called Rhinebeck, up in New York. His name is Ken Bock.”
“Does he have a treatment?”
“He has recoveries.”
Syracuse, New York
When the ugly rash on Kevin Densak’s head and back hit the one-year mark, his mother knew she needed to find a new doctor. She had already seen a dozen doctors about Kevin’s rash, and his other problems, including hyperactivity and chronic diarrhea, but nobody knew what to do. The dermatologist had given Kevin a cream for the rash, the pediatric gastroenterologist had prescribed a thick white liquid for the diarrhea, and the family doctor had given Kevin medication for the hyperactivity, but nothing had achieved lasting results. The treatments for some problems had even made others worse.
The doctors had put two diagnostic labels on Kevin: ADHD, and Asperger’s syndrome, which is a type of autism. But the labels hadn’t helped him heal.
Kevin’s rash of red, circular welts blanketed his back, and was starting to migrate to his neck and head. It was making his hair fall out, and was creeping into the corners of his eyes. His preschool teacher told Kevin’s mom, Denise, that if it got worse, Kevin would have to leave school.
Library of Congress subject headings for this publication:
Autism in children.
Attention-deficit hyperactivity disorder.
Asthma in children.
Allergy in children.