Drenched in sweat from head to toe, 3-year-old Tate Sherrod writhes and moans as his pale blue eyes flash with terrified distress. Nurses in the Grapevine office of Dr. Constantine Kotsanis try to keep Tate still by wrapping his small body mummy-like in a blanket, with only one slender arm left free. Even being straitjacketed can't keep the boy from thrashing violently as Kotsanis inserts an intravenous needle into the boy's forearm, which itself has been immobilized by being lashed to a small board.
The needle must remain in place for five interminable minutes for an experimental but potentially life-altering solution called secretin to seep into his veins. But with one powerful twist, Tate yanks his arm away from the doctor, and the needle comes sailing out. The doctor tries again, this time assisted by two nurses, who restrain Tate on the examining table. Tate's mother, Emilie Sherrod, looks on helplessly as her son continues to struggle. Not until the procedure is finished and the nurses remove the blanket does Tate finally settle down.
But even when it is over, Emilie cannot relax, for Tate's twin brother, Ty, will immediately undergo the same treatment. True to his nature, Ty, the more passive of the two boys, does not resist as much, though his face contorts with the same mixture of dread and panic.
A neonatal nurse at Presbyterian Hospital of Dallas, Emilie figures she should be hardened to the shrieks and struggles of youngsters whose bodies are under assault from modern medicine. But when your own child is being poked and prodded, she says, it's different, tough for even the most seasoned nurse to sit helplessly by as her child cries and thrashes uncontrollably.
The most frustrating part of it all is that Emilie and her husband, Tim, cannot explain to their sons what's going on. They cannot make their sons understand that they are doing this for their own good. Nor can they truly comfort them, for the boys recoil at their parents' touch.
Ty and Tate Sherrod live in their own insular worlds, in which they seem to understand little, interact with no one, and speak not at all. They suffer from an affliction that affects 500,000 children, and the numbers are rising. The boys live in a prison called autism, and their parents are searching madly for the key that will set them free.
That is why, a few days before Thanks-giving, the Sherrods drove from their home in Richardson to Kotsanis' Grapevine office. He is one of only a handful of physicians in the country willing to provide their sons with a scarce, unconventional therapy called secretin that is being touted as nothing short of a miracle in treating autism.
The Sherrods' Dallas developmental pediatrician, Dr. Elaine Ellis, however, has warned them that they are wasting their time and money. But how can you put a price on hope? What parent wouldn't pay to see the light in their children's eyes once again, to get a hug from a kid who's stopped hugging altogether; how much would they be willing to spend to be able to tell their children that everything is going to be all right, and make it be true?
Tim and Emilie Sherrod didn't plan on having children so early in their marriage, but five months after they wed, Tim's mother was diagnosed with lung cancer. Tim wanted to give her a grandchild before she died, but the twins were born six weeks after she passed away.
Although a month premature, Tate and Tyler were born perfectly normal. Then, eight weeks later, Tate developed pneumonia, which required him to be hospitalized for a week. With no family in town--Tim is from Lubbock, Emilie from Wichita Falls--the couple had to take shifts, one staying with Tate in the hospital while the other looked after Tyler at home.
Tate got better, but over the next few months, Emilie had to give him regular breathing treatments with a machine that blew medicated vapor into his young lungs.
"It seems like our life never really recovered," Emilie says. "There always seems like there is a crisis."
Shortly after Tate left the hospital, Tim, an accountant by trade, lost his job with a big accounting firm. He had just taken time off to tend to his dying mother, and his bosses were not understanding about how much time he now needed to devote to his sons. He decided to become a residential real estate broker, which gave him more freedom but took a toll on his income.
Despite Tate's early illness and Ty's repeated ear infections, the boys progressed right on schedule during their first year. By the time they turned one, they were uttering their first words. They could identify facial features and play patty-cake--timely hitting those simple, endearing milestones parents often take for granted. The Sherrods were no exception.
Ty and Tate were the type of babies who inevitably stopped traffic in supermarket aisles. With their straight, silky blond hair, saucer-sized pale blue eyes, and shy smiles, they captivated strangers wherever they went.
In the spring of 1997, when the boys were 16 months old, Emilie began to notice certain things about the twins' behavior that troubled her. They rarely, if ever, smiled anymore and stopped talking altogether. Though the boys were never good sleepers, they began waking frequently and would shriek through the night. Nothing seemed to calm them. During the day, the boys were becoming increasingly more difficult to control. They whined incessantly, wouldn't play with their toys, and ran aimlessly through the house, pulling things out of cabinets and climbing on countertops.
Worse, they refused to be held.
At the boys' 18-month checkup, Emilie told their pediatric nurse she was afraid there was something wrong with the twins' development. The nurse dismissed Emilie's concerns.
"They're twins, and they're boys--they have two strikes against them," the nurse told her. "They'll catch up soon enough."
Instead, they started regressing. They stopped responding to their names and refused to make eye contact. Their alert, shiny eyes became as opaque and flat as the underside of flower petals. They developed odd behaviors--walking on their toes and flapping their hands in front of them. They stared mesmerized at the TV all day long, and any effort to re-focus their attention would set off a protracted tantrum that would last for hours.
It seemed as though the Sherrods' sons were disappearing right in front of them, and they couldn't do a damn thing about it.
Secretly friends and family members thought there was something wrong. Some thought the boys were just spoiled rotten, throwing tantrums to get their way. Others thought they might have a hearing impairment. Emilie suspected the boys were autistic, but was too frightened to consider it a real possibility.
The boys had attended preschool at Northway Baptist Church, and the teachers were worried about how antisocial they had become. They weren't talking, weren't interacting with the other children except for a frequent bite or hit. The preschool director assured the Sherrods the school was committed to their children and would simply hold them back. But in the fall, when the class lists were posted on the preschool door, Ty and Tate's names weren't on them. The school had decided the boys were too much to handle. It just didn't bother to inform the Sherrods.
Days later, Emilie sought out Dr. Ellis, a developmental pediatrician she knew from the neonatal unit at Presbyterian. "I want to talk to you about something privately," Emilie said. Before they even got to Ellis' office, Emilie blurted out, "I think the boys might be autistic."
Ellis had Emilie bring them in immediately for testing. Opening a suitcase full of toys, the doctor asked the boys to do a series of tasks that children of their age should be able to accomplish handily. The boys ignored her gentle commands. She threw a ball at them to see whether they would react. They didn't flinch. All they would do was bang on the suitcase.
Within five minutes, Ellis turned to Emilie and Tim and said, "I think we may have a real problem here."
Sitting in the living room of their small Richardson home, the Sherrods flip through the boys' baby books, looking at the snapshots of their sons' first year, when their lives were full of promise and possibility.
There they were during their first Halloween, 11 months old and dressed as cows, their eyes bright with delight as they held up goody bags. At their first birthday--dapper in bow ties and vests--they stared excitedly at their new toy car. By the time they were 18 months, a photo captured a faraway look in Ty's eyes. They were in tears in their second birthday pictures; no interest in the cake or the gifts. About this time they refused to be held at all. And by August 1998, when they were 2 years and 8 months old, they had a haunted look about them.
"You can look at the front of this book and see when they were still here," says Emilie, her eyes glazed with tears. "When they were still alive."
Although Ellis had made a preliminary diagnosis of autism, she refused to make it conclusive until the boys reached 2 years of age. But the Sherrods used this time to try to prove her wrong. They contacted the Dallas County Early Childhood Intervention Program, which sent a therapist to their home twice weekly for 30-minute speech and occupational therapy sessions with each boy.
But Tate and Ty showed little improvement over the next few months. They were all blank stares and manic energy. They seemed to crave inedible objects--paper, the rope tail of a stuffed horse, leaves, and dirt. They had chronic diarrhea. They climbed on the windowsills to catch a glimpse of their reflections. The Sherrods could barely take them out in public anymore. The only thing that would still them was the video Toy Story; somehow the computer-animated movie would transfix them for hours.
In February, a month and a half after the twins turned 2, Ellis made the diagnosis official: pervasive developmental disorder, also known as an autism spectrum disorder. Whatever the name, the prognosis was not good.
Emilie began filling file folders with information on the perplexing puzzle that is autism. What she discovered gave her little comfort--there were more questions than answers.
For decades, doctors believed autism was a psychological and emotional ailment caused by aloof mothers who did not or could not nurture their children. Such a harsh rationale only compounded the problem by putting the blame on mom.
Today experts believe autism is a neurobiological disorder that interferes with a child's ability to communicate verbally and nonverbally. Unlike deafness or learning disabilities, however, autism also severely limits a child's ability to interact with the world around him. In addition, these children suffer severe sensory disturbances: They are either over- or under-sensitive to sound, touch, taste, sight, and smell. Tate Sherrod, for instance, smells everything before he puts it in his mouth. Some autistic children are also mentally retarded, while a small percentage are savants, exhibiting extraordinary prowess in such areas as numbers. However, their seemingly magical abilities don't often have practical applications. The autistic character played by Dustin Hoffman in the movie Rain Man could memorize a phone book at a glance or look at a pile of toothpicks and instantly know how many were there.
No one knows for sure what causes autism, although the prevailing wisdom is that there is a genetic predisposition coupled with some trigger like viruses, environmental toxins, diet, and even vaccinations. But nothing has been proved to be the culprit.
The only thing the experts could tell the Sherrods with any certainty was that their sons' development will always be atypical and delayed. They can be treated but never cured.
What the Sherrods quickly learned was that there were dozens of therapeutic approaches for treating children with autism, each one claiming to have had miraculous results in a small number of cases. It's as if there are different keys to unlock each child. For the Sherrods, determining which key, if any, fit their sons was overwhelming and nerve-racking. Overnight they became medical experts, scientific navigators of a treacherous terrain that baffled even the best medical minds. If they couldn't quickly find the way, their children might be lost forever.
One approach required intensive, one-on-one behavior modification eight hours a day. It was expensive--almost $50,000 a year for both boys, which the Sherrods could hardly afford. They thought it was too rigorous, especially for their boys, who would not sit still for more than a minute at a time.
The boys were too young to undergo auditory integration therapy, in which children listen to modulated sound through earphones in two 30-minute sessions a day for 10 days. No one is sure why this works, but its advocates claim it desensitizes hearing, and many children begin communicating within days of completion.
Vitamin therapy, doses of B6, shows promise for some autistic children; others respond to special milk-free, wheat-free diets; or dolphin therapy, in which children swim with these mammals, whose high-pitched squeals, some claim, resonate with autistic children, perhaps desensitizing them to sound the same way that auditory integration does.
The Sherrods decided that the Callier Hearing and Speech Center for Communication Disorders would be best for their children. Located near Parkland Hospital, the intensive preverbal program pairs 12 children with 12 clinicians in a play-based approach to learning four mornings a week. Clinicians follow the child's lead and determine what interests him, which is not easy with an autistic child who might spend hours mindlessly spinning the wheel of a toy car. But this approach, based on the idea that children themselves hold the keys to their development, appealed to the Sherrods. They were crushed when they learned last spring that there was a waiting list to enter the program.
The Sherrods continued their search for the right treatment, at the time believing that no matter what they decided upon, progress would be painstakingly slow, if it came at all. Yet they were afraid to look too far ahead for fear of what they'd see--two children, infants forever, dependent on them always. The day-to-day burden of caring for their boys was exhausting. By last summer, the boys were hardly sleeping at all, Emilie was seriously depressed, and their marriage was beginning to fray. Their minister was particularly worried about Tim, whom he saw as perpetually upbeat and not dealing with the gravity of the situation.
"He thought Tim was going to walk," Emilie says. "But we both realized it takes both of us to do this. Frankly, if I had to do it alone, I wouldn't want to live."
Last fall, almost a year after the cocoon of silence had enveloped the boys, the Sherrods got their first glimmer of hope. A tenacious New Hampshire mother had discovered something quite by accident: a possible cure for autism.
Like the Sherrod twins and countless other autistic children, Parker Beck of New Hampshire suffered from chronic diarrhea. By age 3, he had been subjected to a regimen of allergy tests and other procedures that proved fruitless. Then his parents took him to the University of Maryland medical system, where he underwent an endoscopy--an examination of his gastrointestinal tract. The test appeared to be another dead end; the doctors could not find the cause of the boy's digestive problems.
But a few days later, Parker's diarrhea mysteriously stopped, and he began sleeping through the night for the first time in two years. Ten days later, Parker, who was entirely nonverbal, began reciting words as quickly as his therapist could hold up flashcards. For the first time in his life, he said the word "daddy." After five weeks, he spoke in short sentences, initiated eye contact, responded to requests, and became potty-trained.
Victoria Beck, Parker's mother, worried about whether the progress would last and furiously began investigating what had brought about her son's awakening. In questioning doctors at the University of Maryland about her son's endoscopy, she learned they had used secretin, a hormone extracted from pig intestines that aided in diagnosing problems with the pancreas.
These doctors seemed skeptical that secretin had played any role in Parker's progress, which had begun to level off after about five weeks. At Beck's insistence, they grudgingly agreed to give him another injection, which again brought about dramatic improvement. Then the doctors cut him off. Beck was told that secretin was only authorized as a diagnostic drug, and that they were concerned about the safety of using it in such a nontraditional way. Unbeknownst to Beck, they had already applied for a patent to use the drug to treat autism.
Meanwhile, Beck contacted Dr. Bernard Rimland at the San Diego-based Autism Research Institute to report her son's miraculous response to secretin and begin networking with other parents. Over the next 18 months, more than 100 autistic children were treated with infusions of secretin. About 60 percent showed some positive response--from modest gains to dramatic improvements.
No one is sure how secretin works, but some doctors theorize that the hormone improves gastric function, which in turn improves brain chemistry. Studies have shown that there are receptors in the brain and eyes for secretin, which suggests it may work directly on brain function.
"There is nothing out there as exciting," says Rimland, who has an autistic child and is the author of a groundbreaking book refuting the myth that unaffectionate parents cause autism. "It brings about much greater improvement much quicker than anything else investigated to date."
In late October, NBC's Dateline aired a segment on Victoria Beck's discovery. Emilie and Tim Sherrod watched the show in amazement. "We looked at each other and said, 'We have to get some,'" Tim says.
The Sherrods knew that finding a doctor who had access to the hormone and was willing to give it to their boys was not going to be easy. Victoria Beck wouldn't even mention the name of her doctor on the air, for the supply of secretin was rapidly being depleted. But the Sherrods got lucky. They immediately surfed the Internet and found a list of doctors who belonged to an international organization called Defeat Autism Now! (DAN), a group dedicated to eradicating autism through the use of cutting-edge techniques.
Of the 30 doctors and scientists in the group, only two were from Texas, and one of them practiced in Grapevine. Before they went to bed that night, the Sherrods left a message for Dr. Constantine Kotsanis, the first of dozens he received from hopeful parents around the country in the following days. A nurse phoned Emilie the next day and told her Kotsanis was planning to conduct a study on secretin. For the boys to participate, it would cost the Sherrods $2,000 up front to guarantee a four-month supply of secretin, plus $12,000 for four monthly injections, tests, and nutritional supplements. According to the Wall Street Journal, the drug costs only $179 a dose wholesale. To the Sherrods, that disparity didn't matter. They were desperate.
Although housed in a traditional, high-rise medical office building next to Baylor Hospital-Grapevine, The MindBody Health Center International is not your typical doctor's office. The first clue: A sign on the office door asks visitors to refrain from wearing perfume, because many of the patients are highly allergic. The practice specializes in treating children and adults with chronic conditions, specifically autism, learning disabilities, attention deficit disorder, allergies, and chronic fatigue syndrome. The approach combines traditional Western medicine and alternative techniques, placing special emphasis on diet, nutrition, and vitamins.
A certified ear, nose, and throat specialist, Kotsanis embraced alternative medicine a decade ago, when traditional approaches failed to heal his chronic digestive problems. Costly conventional treatments also failed to help his son, who at the age of 5 developed frequent ear infections, chronic allergies, and hearing and learning disabilities. After spending a fortune on doctors and special schools, Kotsanis began treating his son by changing his diet and giving him nutritional and vitamin supplements plus auditory therapy. He says that after his son's symptoms improved about 95 percent, he decided to devote the majority of his practice to children with special needs.
"In my opinion, ADD, dyslexia, and autism are all the same thing, just a matter of degree," Kotsanis says. Like many of the doctors who are part of DAN, he believes that autism is caused by a confluence of factors including genetics, an overuse of antibiotics, bad nutrition, environmental toxins, and vaccinations.
"I have dedicated the rest of my life to finding a solution for children with autism," he says. "Your heart goes out to these parents, whose children don't sleep, don't communicate, don't respond to anything. They [parents] tell me they are on the verge of suicide; that's how far these people are pushed."
The Sherrods were almost at that point when they went to see Kotsanis last November.
Maybe secretin would be the quick fix their family desperately needed. But $14,000 was a lot of money, especially given the Sherrods' recent expenses. They had just purchased a small house in Wichita Falls for $25,000 so they would have a place to stay when they visited Emilie's family. She wanted the boys to know their grandparents and cousins, who were like strangers to them. And it was too difficult and dangerous to stay with the boys at her parents' home when they went to Wichita Falls for a visit.
They also had the expense of Callier, which had accepted the twins only four days before the program started in September. Its annual cost of $7,200 for both boys was not covered by their health insurance because their referring physician felt Children's Medical Center offered the same service at nominal cost. Pointing out that Children's program was only two hours a week, compared with 10 at Callier, the Sherrods attempted to persuade the doctor, but were unsuccessful. The Sherrods' church, Highland Park United Methodist, eventually offered to pay the first year's tuition for the boys at Callier.
Kotsanis' secretin therapy was far too experimental for their health insurer even to consider. The Sherrods, however, managed to scrape up $2,000 for the initial visit with Kotsanis, and Emilie's parents loaned them money for the next visit. They had no idea how they would come up with the rest, which had to be paid in cash before each appointment. Emilie's colleagues at Presbyterian Hospital helped them raise money through bake sales. The hospital even put up a poster showing the progress made toward reaching the goal of the "Ty and Tate Sherrod Autism Treatment Fund." At Christmas, Tim's boss, Betty Abio of Abio and Associates Realtors, presented him with $7,600 that his colleagues had raised on his behalf for their annual holiday charity drive.
The only one who was less than enthusiastic about their cause was Ellis, the developmental pediatrician. She was skeptical about the treatment because there were no double-blind clinical studies done on the hormone's effectiveness in treating autism, and anecdotal evidence was not hard science.
"She felt bad that she didn't believe in what I wanted to try," Emilie says. "She thought it was a waste of money."
Before Kotsanis would administer the boys' first secretin infusion, he gave them a battery of tests--hair, blood, urine, and stool analysis. He wanted to do skin testing for allergies, but the Sherrods couldn't afford it. "He had a lot of things to offer, but we had a goal and a certain amount of money," Emilie says. "And I worried that if we did so many different things, how would we know what worked?"
Not surprisingly, the tests showed that the boys had a very poor diet. There are very few foods they are willing to eat, and they were not absorbing the nutrients their bodies needed, which is fairly common with autistic children who suffer gastrointestinal problems. The hair analysis showed they had a high level of heavy metals in their system, and the blood tests showed an overabundance of yeast. The doctor believed the yeast buildup, which prevents the body from absorbing nutrients, was a result of having had too many antibiotics over the years.
Kotsanis insisted the boys go on a special diet for four weeks to heal their intestines in preparation for the secretin. He took them off cow's milk, white flour, refined sugar, and almost all processed foods. The Sherrods had to buy their groceries--including rice milk and such whole-wheat products as chicken nuggets, pasta, pastries, and chips--at Whole Foods. Not only was it expensive, but mealtime turned into a battle zone for the boys, whose autism made them resistant to change. The doctor also provided nutritional supplements, a homeopathic remedy for the metals, and an antifungal medicine for the yeast.
Within weeks, the boys' diarrhea dissipated, and they began to sleep better.
The twins received their first injection on November 19, and within several weeks the Sherrods began to see some progress. Ty started giving hugs. They both seemed a little more aware of their surroundings and aware of others. It was as if a bit of the fog that enshrouded them had lifted.
But it was not nearly the progress they had hoped for. In their Richardson home, shortly after Christmas, the Sherrods had a hard time focusing on a visitor. The boys, who turned 3 at the beginning of December, were whirling dervishes, running back and forth on their toes from the den to the kitchen, where the chairs sat on the kitchen table to keep the twins from climbing on the countertops. The trash can rested on top of the washer and dryer to prevent them from toppling it.
"They definitely test you to the nth degree of your patience," said Emilie with a sigh, as Ty tugged on her hand to get her to follow him into the kitchen. He whined and stamped his feet as she tried to figure out what he wanted. "You could tell them no a thousand times, but they don't respond. They don't understand social cues, what's bad, or when I'm angry. You have to remove them or the object. If you put them in a room one at a time, they'll bite on themselves if they're angry. They don't ever stop."
The more disconnected of the two boys, Ty, didn't even seem to notice the visitor sitting in their den. Tate tried to catch a glimpse of her now and then, but when their eyes met, he quickly looked away. Finally, he came over, grabbed a pen, and stabbed some jagged lines on her notepad, then turned his attention to the videotape of Toy Story running on the VCR.
Callier also reported some improvements in the boys. Ty had stopped hitting people, and Tate had stopped biting. But clinicians didn't know whether secretin had anything to do with it. The school gave the Sherrods a progress report on what the boys accomplished during the fall semester. Tate had actually learned a few signs to communicate what he wanted and had started experimenting with making sounds with his voice.
But Ty's book revealed that he spent the entire time working on something called Walk, Mouse, Creep, Mouse. The clinician walks her fingers up his arm while saying the words "walk, mouse, creep, mouse,"and then tickles him when she gets to his underarm. It is a baby game that normally elicits peals of laughter from toddlers. The clinician's aim was to get Ty to anticipate that he would be tickled and make eye contact with the therapist. This sequence of events forms the most rudimentary building blocks of social interaction and communication. This was the only thing Ty accomplished during the entire fall session of school.
"The sad part is, when we went to Wichita Falls for Christmas, their cousin who is seven months younger could do everything--talk, relate to other people," Emilie says. "They didn't even know it was Christmas, that it was supposed to be fun."
The results of the second infusion, in early January, were particularly disappointing. The shot coincided with the boys' starting a new afternoon program through the Richardson Independent School District for children with special needs. Autistic children thrive on routine and sameness, and even the slightest change in schedule or environment can disorient them. When they started the new program, the twins were out of sorts for weeks. Ty bit one of the teachers so hard that he drew blood.
Just as they started adjusting, the Sherrods got more bad news. Tate had begun waking up in the middle of the night and inexplicably laughing. Ellis, the developmental pediatrician, feared he might be suffering from seizures. She scheduled a brain scan, which would require that the Sherrods keep him awake all night and not feed him for 12 hours before the test. At the last minute, they decided to cancel the test because they thought it would be too disruptive. Instead they just hoped the doctor was wrong.
The Sherrods try not to feel sorry for themselves, but sometimes it's difficult. "The other day, Oprah did a program on the McCawley septuplets. The parents get a date night once a week," Emilie says in astonishment. "We don't."
"Our lives are hell," says Tim. "Nothing bothers me about having special-needs kids except the stress and the exhaustion. It wasn't like I had to deal with this loss of the perfect child. I never thought my children were going to be perfect. But I do ask why our lives have to be so hard in every aspect. The hardest part is realizing they may not get any better. They may never eat adult food or get potty-trained. But I wouldn't mind changing diapers on them when they're 20, if I knew they could just function."
On February 19, in the waiting room of Kotsanis' office, Tate rests in his mother's arms and nuzzles her neck--a rare moment of cuddling. For this, the third infusion, the doctor has decided to give him Versed, a mild sedative, to relax him.
Even drugged, Tate squirms and whines when he recognizes the blue curtains in the room where he will be injected. All in all, the process goes more smoothly today. But Kotsanis is concerned at the boys' lack of significant progress on the treatment. Most of the children who have been helped on secretin respond within weeks of the first dose.
After analyzing the boys' blood, Kotsanis remarks that their yeast levels are high and that the Sherrods must "support the boys nutritionally." Emilie admits they are having a hard time sticking to the diet. There are few foods the boys will eat, and the diet limits their choices further. They're getting tired of the food, even the organic corn-meal cheese puffs. And she doesn't have time to prepare elaborate meals for them.
Even the quick and easy meals are an ordeal. A few days ago, Tim made the boys whole-wheat pasta and organic meat sauce. When Emilie came home from work at 7:30--the end of a 14 1/2-hour day that began with a 5 a.m. call from the hospital--she walked into the kitchen to find the walls and floor covered with spaghetti and sauce.
"The boys are into texture, so they like to touch their food and throw it," Emilie says. "See what we have to do just to get through one meal."
In the next few days, Emilie calls excitedly. Ty said his first words. "He said 'no' at school, and then he said 'bye' when we were in the car. I almost had a wreck."
Tate has learned to stay in a closed room for 25 minutes at a time with his clinician.
Jan Lougeay, one of the three directors of the Callier program, is not certain secretin is the reason for the boys' progress. Several children in her program are undergoing the treatment, and she has not seen any miraculous changes. "If there is any difference at all, it's been in their tolerance to things. Many things will help a child a little bit," she says. "But the only thing we know for sure is that long-term individualized interaction almost always has a profound effect. That doesn't mean a cure.
"But we never tell a parent not to try something. It is such a perplexing disorder. These children are like a puzzle that needs to be solved. It breaks your heart."
As it turns out, Emilie's excitement after the third infusion is short-lived. In the following two weeks, the boys don't sleep at all, even after the doctor increases their sleep medication. And they've each developed a bad case of eczema. Emilie's own health also deteriorates. She is suffering from vertigo, brought on, her doctors speculate, from exhaustion. She decides to leave the hospital and take a job with a critical-care nursing agency, where she can work when she wants to.
The problem with the boys' sleeping, the Sherrods finally figure out with help from Ellis, is that their bedroom had been temporarily altered. The Sherrods had moved in some furniture from the den because they picked up the carpet and refinished the floors.
"They're my little Rain Men," says Emilie. "In the movie, Dustin Hoffman had to buy his underwear in the same store all the time. My boys can't deal with change at all either. If I go a different way to Callier in the morning, or if I stop on the way home to do errands, they'll become uncontrollable. They know only one way."
In the end, there were to be no miracles for the Sherrods. The boys do not make any significant strides after the fourth infusion, and Kotsanis does not recommend they receive any more. Instead, he suggests they have chelation therapy to remove the heavy metals in their system, and the Sherrods are considering it. They are also thinking about putting the boys on Ritalin to see if it helps their concentration.
"I'm disappointed there was not more of a response," says Emilie. "Especially considering how much money it cost and how much trauma we put the boys through. It's in God's hands. It's his plan. But we're thankful that they're better than they were this time last year."
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If nothing else, their diarrhea is gone. They're also less aggressive and much more responsive. Tate will retrieve his toothbrush when it's time to brush his teeth and will get in the bathtub when asked. And both boys will hold Emilie's hand on the way to the car, seemingly more amenable to touch.
"That's great," Emilie says. "That's 40 pounds I don't have to carry so many times a day."
They've even made progress in the Richardson school program. They have bonded with an older boy who has mental and physical handicaps. They run by him and reach for his hands, and he smiles. They know he's slower than they are, and they have to be gentle with him. They even kiss and hug him.
"It's really neat," Emilie says. "For once, my children are reaching out and helping someone else. You take what you can get as it comes, and hope it comes. I revel in the small successes.