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VIEWS: 42 PAGES: 9

  • pg 1
									Dream

Catching the lightning
Gwendolyn Guay’s long road to finding the source of her epileptic seizures
page 6

For parents, families and friends of Children’s Hospital Boston

Summer 2009 | childrenshospital.org/dream

A sibling study finds clues about the complex condition page 12

What’s inside

• In his own words: Back to school after cancer treatment page 3 • The latest findings from Children’s researchers page 9 • Five myths about your child’s media use page 10

Dream online
read

summer 2009
SnIppetS

snippets
In hIS own wordS

Visit childrenshospital.org/dream for these online exclusives:

A mother embraces the challenge of raising a child with celiac disease How to stay lean in a down economy Why do people with Down syndrome have less cancer? A novel surgery frees a teen from debilitating pain and drug dependence A Children’s nurse brings mosquito nets and evidence-based practices to Africa Clinicians caution parents who blog about their children’s illnesses Long-time Children’s volunteer logs 3,000 hours Social work efforts extend beyond the hospital’s walls watch Children’s Augmentative Communications Program demonstrate the devices that help them communicate Is there a benefit to babies watching TV? A very premature baby defies the odds How HealthMap tracks the swine flu outbreak in real-time Children with Down syndrome express themselves through dance

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Back to school | Recommended reading | Home away from home | Children’s online | Carrots and eyesight | Q&A: The dangers of cheerleading | Kids’ media use | Shaken baby syndrome

Catching the lightning

Back to school
By Ronald (R.J.) Agostinelli At age 11, Ronald (R.J.) Agostinelli was diagnosed with acute lymphoblastic leukemia, a cancer of the white blood cells. He missed seven months of elementary school while having chemotherapy. Here, R.J. talks about what it was like returning to his class after a long absence. My parents brought me to Children’s Hospital Boston last summer because I had high fevers and weird pains in my joints. The doctors diagnosed me with leukemia, and told me I was going to need chemotherapy, a special drug that would fight the cancer cells in my blood. They told me I needed the chemotherapy to get better, but it would also make me sick to my stomach and tired, and other people’s germs would be dangerous to me. I wouldn’t be able to play outside or be around groups of people while I was in treatment. When I found out I wouldn’t be starting fifth grade for at least six months, I was a little disappointed. Some kids might be happy to skip school, but not me. I like learning, and I especially like hanging out with my pals. I found out that instead of riding the bus to school, I would be staying home, and school would come to me. I had a personal tutor who visited me every day for a lesson. She taught me all the subjects my friends were taking—and I got to learn in my pajamas if I wanted. At home, I got to be in charge of my own schedule. After tutoring, I could choose to play with my trucks, listen to music or do homework. I became an expert on the computer and got really good at entertaining myself. In the evening, I got to practice another hobby of mine: cooking. My mom would make dinner—tacos or chicken nuggets or soup—and I’d help her. But I really missed my friends. I’m what you call a “people person,” and being stuck in the house all the time got so boring. Because I was so sensitive to germs, I couldn’t go to any public places, like restaurants or movies. When I left the house, it was either to go to Children’s or to the Jimmy Fund Clinic at the DanaFarber Cancer Institute. After seven months, I was so excited when my doctors told me I could go back to school. I was a little nervous, too. The chemotherapy made me lose all the hair on my head, so I looked different. And I felt a little different. I still had to take medication each day, so I would be at back at school while taking drugs that could sometimes make my stomach hurt. I wondered if my friends would think I looked strange, or whether they would understand why I had been gone so long. During recess, I used to play football with the other kids. I wasn’t good at catching the far passes, so sometimes I’d run with the ball and get tackled. I knew I couldn’t do that for a while. On my first day back, my nurses and Child Life specialists from Children’s came with me and talked to my class about cancer. They explained why it was important to my health that everyone wash their hands and stay home from school if they were sick. I answered my classmates’ questions, and they had a lot!

For centuries, epilepsy has confounded patients like Gwendolyn Guay and their doctors. Today at Children’s, new technologies and a multidisciplinary team are bringing new options—and new hope—to kids with this complex condition.

reSearch BrIeFS

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Glass table danger | The influence of adult content on child viewers | Socioeconomic status and heart transplants | How does discrimination impact a child’s mental health?
FeatureS

Media myth-busters

From the influence of Baby Einstein DVDs on a baby’s brain to the amount of time teens spend on social networking sites, media use raises a host of challenging questions for parents. Children’s Center on Media and Child Health has some answers.

department of public affairs and Marketing
Michelle davis Vice President of Public Affairs and Marketing Bess andrews Director of Public Affairs anne Speakman Director of Marketing Matthew cyr Editor erin graham Assistant editor Javier amador-peña Designer Matthew cyr, nancy Fliesler, erin graham, Melissa Jeltsen, Jamie newton Contributors Javier amador-peña, patrick Bibbins, webb chappell Photographers Janna doherty Videographer alli arnold, Stuart Briers Illustrators

cover Story

12 Arresting autism

On average, children like Jack Irzyk are diagnosed with autism around age 3. By studying their brains and those of their infant siblings, Children’s researchers hope to identify the condition earlier and develop new interventions to halt it in its tracks.

r.J. agoStIneLLI missed seven months of school while being treated for
leukemia. He returned at the end of March.

Now, I’ve been back at school for a few weeks and I’m getting back into the swing of things. I love being back in my regular classes, even if I’m only going for a few hours a day (my mom says I have to take it slow at first). It’s great to be around my friends again, and I’ve even made some new ones. For other kids who are going through this same experience, I’d like to give them this message: Leukemia is hard to deal with in the beginning, and there are a lot of challenges you’ve got to get through. But it does get easier as you go along. I promise. More at chILdrenShoSpItaL.org/dreaM/SuMMer09 	 	 atch a video of R.J.’s first day back at school W 	 Read about a Children’s program that brings cancer care home 	 Read more about acute lymphoblastic leukemia 	 	 ther first-person stories from Children’s patients and staff O 	 	 earn more about Children’s Hospital/Dana-Farber Cancer Care L

how to reach us
Letters to the editor: matthew.cyr@childrens.harvard.edu

Dream Online, the Web site of Dream magazine, is updated every week with inspiring stories and videos about Children’s Hospital Boston. Visit childrenshospital.org/dream to check it out. While you’re there, sign up for e-Dream, our monthly e-newsletter for parents and families.

Dream | Summer 2009 | childrenshospital.org/dream

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Books
Interesting reads
Parenting Across the Autism Spectrum: Unexpected Lessons We Have Learned by Maureen Morrell and ann palmer Two mothers share the experiences and practical guidance they’ve learned while parenting children at opposite extremes of the autism spectrum. Read “Arresting autism” on page 12. Taking Cancer to School by cynthia henry This story is about a boy who returns to school after leukemia treatment. Read a first-hand account from a Children’s patient on page 3. Epilepsy: the Ultimate Teen Guide by Kathlyn gay Gay looks at epilepsy’s impact on teens, including the challenges of school, work, driving, dating and sports. Read “Catching the lightning” on page 6. Into the Minds of Babes by Lisa guernsey A science journalist and mother, Guernsey encourages parents to balance TV-watching with play and bonding time. “Read Media myth-busters” on page 10. All books are recommended by Alison Clapp, Children’s Hospital Boston’s librarian. All available at amazon.com

snippets

dream By diGits
Fact or FIctIon? KIdS’ MedIa uSe

Home away from home

Photo: Patrick Bibbins

Families travel from the Midwest—and as far as the Middle East—to seek care at Children’s Hospital Boston. But finding affordable accommodations near the hospital has long been a challenge. Today, there’s a new option: The Yawkey Family Inn, just a short walk from the hospital. Opened on June 1, the inn offers 22 bedrooms, nearly doubling the hospital’s family housing. That extra space is critical, as the hospital receives as many as 50 requests a day for housing assistance. Once a grand old Victorian, the house became a Northeastern University fraternity house that fell into disrepair. Renovation efforts, led by Children’s Hospital Trust’s Next Generation Developers’ Task Force, took more than a year. And it took a community of support—with gifts from the Yawkey Foundation, the Family Inn Foundation, the Corkin Family and many individuals—to make it possible. Corporate support from BJ’s Wholesale Club, Bob’s Discount Furniture, NSTAR, Lowe’s and others outfitted the house with furniture, appliances, linens and even a stocked pantry. Read more at childrenshospital.org/kentstreet

Eating carrots improves your eyesight

51%

A qualified yes. The eye depends on vitamin A for production of visual pigments, and carrots are a good source of it. Severe vitamin A deficiency can lead to vision problems, such as night blindness. However, if you have an adequate supply of vitamin A in your diet—and almost everyone does—then more carrots will not make you see better. —Lois Smith, Md, phd, ophthalmology

of American homes have a TV on all or almost all of the time that people are at home

20,000 79% #1

q&a

half-minute commercials are watched by a child every year

Cheerleading soars into the danger zone
Q: Why is cheerleading so dangerous?

The National Association for Catastrophic Sports Injury Research surprised many last year when it reported that the most dangerous sport for young female athletes wasn’t a contact sport, but cheerleading. Indeed, cheerleading accounted for 65.1 percent of serious injuries among female athletes over the past 25 years. Michael O’Brien, MD, fellow in Sports Medicine at Children’s, weighs in.

of children under 2 watch TV

watch our vIdeoS

Watch videos about the amazing patients and clinicians at Children’s, including: • A Children’s patient goes back to school after treatment for leukemia • How researchers are using home video to detect autism earlier • Following swine flu via Children’s HealthMap, an online disease-tracking tool • Three patients in Children’s Augmentative Communications Program demonstrate the devices that help them communicate. • Is there a benefit to babies watching TV? 	 childrenshospital.org/newsroom/videos 	 youtube.com/user/ChildrensHospital

A: The more complex and riskier maneuvers in cheerleading are called stunting, which has moves similar to gymnastics. The big difference, however, is that gymnastics is done on padded surfaces, instead of the hardwood gym floors, school tracks or football fields where cheerleading is performed. Also, given the risks involved, there isn’t as much oversight as there usually is in traditional high school and college sports. Unless stunting techniques are closely monitored and instructed, the risk of catastrophic injury for these young athletes will remain high. 	 	 ead the entire Q&A about cheerleading and the rise of another risky sport: mixed martial arts R

whIte coat quote

The most popular baby shower gifts are Baby Einstein DVDs— which are marketed as educational, but show no benefits

SuBScrIBe to our e-newSLetter
Interested in watching video clips of our experts discussing children’s health issues? Want to read Q&As on everything from substance abuse to cholesterol medicine for kids? Want to read powerful stories about Children’s patients and staff? Then sign up for e-Dream, a monthly e-newsletter from Children’s Hospital Boston, one of the world’s best hospitals and research centers for children. childrenshospital.org/signup

“It’s extremely violent shaking; an impulsive act of frustration that can have a catastrophic result.”
—allison Scobie, LIcSw, MBa, director of children’s child protection team, on shaken baby syndrome (SBS), which has increased dramatically during the economic downturn 	 	 ead a first-person account written by the mother of a child with shaken baby syndrome (SBS) R 	 	 ead a Q&A on SBS and how it can impact children and families R

200,000
acts of violence and 18,000 murders are witnessed in media by children by age 18 For more on this topic, read “Media myths-busters” on page 10. 	 	 skthemediatrician.org a

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catching the lightning
By Erin Graham

Finding the elusive electrical impulses at the core of epilepsy isn’t easy. So neurologists use an arsenal of tools to peer inside the brain and pin down the source of seizures.
he first few times Gwendolyn Guay stared off into space mumbling to herself, her parents assumed she was just lost in thought. “Gwennie has always been strong-willed, so I wondered if she was just ignoring me,” says her mom, Nancy. But the episodes became more frequent and stranger: Gwen would become unresponsive for up to a minute, pressing her fingers together while making soft clucking sounds. Soon, Nancy and her husband, Stewart, suspected the staring episodes were actually seizures and took Gwen to a specialist in their home state of Maine, who diagnosed her with epilepsy. Epilepsy is a disease that remains stubbornly bewildering—to the nearly three million Americans who have it and the doctors who treat it. In some cases, it can be traced to an underlying disease, injury or brain malformation. But in most cases, its origins are a mystery. And while many new epilepsy medications have come on the market, the percentage of people —Blaise Bourgeois, Md, whose seizures can director of children’s hospital Boston’s epilepsy program be controlled by drugs remains stubbornly unchanged: two thirds. Gwen’s proved to be one of the intractable cases. For five years, the Guays hoped that a mix of medications would stop her seizures. But some had disturbing side effects, like the shakes and nervous ticks, and every time a drug seemed to work, the seizures would creep back. “I’d almost forget about Gwen’s epilepsy and then a seizure would hit,” says Nancy. The seizures were hard on Gwen, often leaving her exhausted. Once, a seizure struck during ballet practice, causing Gwen to wet herself in front of her friends. “I felt really embarrassed,” she says. “The seizures made me feel different than the other kids.” By Gwen’s 9th birthday last September, it was clear that medications weren’t working. Her parents took her to see Blaise Bourgeois, MD, director of Children’s Hospital Boston’s Epilepsy Program, to undergo an evaluation by his team of neurologists,

T

“Most of my patients tell me that having even one seizure a week ruins their lives.”

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Illustration: Stuart Briers

neuropsychologists, radiologists, imaging specialists and neurosurgeons. If the team could pinpoint one place in Gwen’s brain that was over-firing and causing the seizures, the surgeons might be able to remove the bad tissue and cure her epilepsy. “It’s like trying to defuse a bomb,” says Bourgeois. “The hope is that you can go in and remove the trigger.” While this kind of surgery is the most effective treatment—and epilepsy’s only real cure—only about 5 percent of patients are candidates for it. Armed with the latest brain imaging devices, the epilepsy team unleashed its artillery of tests, searching for the spot (or spots) where Gwen’s seizures were originating—as well as spots that controlled crucial functions like movement, language or memory. “Unless there’s a clear lesion, all brain tissue looks the same,” says Bourgeois. “It’s like looking at a computer chip; you don’t know what it does by its appearance, so you need to find out how it works.” So Gwen began a week-long session of 24-hour electroencephalogram (EEG) monitoring to record her brain’s electrical activity through 26 electrodes on her head. Results suggested that her seizures stemmed from the left side of her brain, but weren’t conclusive, since some signals may have ricocheted from the right side. More clues sprung from sophisticated brain imaging tests. For one, nurses injected radioactive substances into Gwen’s bloodstream to track chemical activity and blood flow in her brain; another captured the magnetic fields generated by her brain cells, painting a three-dimensional picture of her brain. Together, the tests narrowed down dozens of possibilities to just a few, and suggested that her seizures were coming from her left temporal lobe, the part of the brain involved in making memories and processing emotions. Finding what’s wrong in an epilepsy patient’s brain is an important hurdle, but finding what’s right is an even bigger one. Before removing a piece of epileptic brain, Gwen’s doctors needed to know how close it was to healthy brain tissue and the possible effects of its removal. They paid special attention to language and memory—two skills traditionally housed in the left temporal lobe, close to the epileptic area. To get a clearer idea of which half of her brain controlled certain functions, doctors

Dream | Summer 2009 | childrenshospital.org/dream

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research Briefs
the LateSt dIScoverIeS FroM chILdren’S reSearcherS
examined the monitoring and imaging results and tried to gauge the likelihood of success. “We had lots of concerns about Gwen’s memory,” says Bourgeois. “If we took out functional tissue, she wouldn’t be able to recall or retain words.” But that possibility had to be balanced against the risks of living with debilitating seizures: injury from falls, accidental death due to drowning and possible long-term effects of medication. Gwen’s quality of life was foremost on Bourgeois’s mind. “Most of my patients tell me that having even one seizure a week ruins their lives,” he says. “Living with her seizures would be a constant worry and self-esteem issue for her as she got older.” Gwen’s parents, who needed to make the final decision, also deliberated. They hated the fact that Gwen wouldn’t ever be able to drive because of her seizures. “We wanted her to have complete freedom and live wherever she wants to when she’s grown up—not just where she wouldn’t have to drive,” says Nancy. But the fact that Gwen didn’t have a crippling disability made the decision difficult. She was a straight-A student who didn’t let her seizures interfere with her life—the kind of girl who intimidated bullies two years older than she was if they were picking on her friends. “It’s one thing to suffer with your kid when they have a broken leg, it’s another to put her through elective brain surgery,” says Stewart. “Gwen had a great life as it was. The worst part was worrying about her memory—we wanted to make her better, but keep her the same. We kept thinking: ‘Please don’t change her.’” Meanwhile, the team made a significant discovery. Just days before her scheduled surgery, a highpowered MRI brain scan finally revealed a pea-sized malformation in Gwen’s left temporal lobe. “It was a big reassurance, and we recommended her for the surgery with a high certainty that it would be a success,” says Bourgeois. And the procedure did go smoothly: Surgeons removed the electrodes that had been so useful in mapping her brain, and easily removed the affected area. “Words can’t express the feeling we had when Gwen opened her eyes and immediately started giving me a hard time about having a bad headache and hungry, grumbly belly,” says Stewart. Within the week, the Guays left for home. With a bright new leopard-print bandana and her memory intact, Gwen was looking forward to returning home to her dance lessons and, she hopes, a seizure-free future. “My dad says I’m tough,” she says. “He thinks I will most likely be the first woman Navy SEAL.”

Kids and glass tables don’t mix
Many peoples’ homes harbor a threat that safety regulations have overlooked: glass tables, which aren’t mandated to contain safety glass. “Huge shards of glass are basically like knives. If they sever an artery, the injury can be fatal,” says Amir Kimia, MD, in Children’s Hospital Boston’s Division of Emergency Medicine. Kimia and colleagues undertook a systematic study of glass table injuries seen in Children’s Emergency Department. On reviewing the patients’ charts, he concluded that of the 174 injuries logged between 1995 and 2007, half would have been preventable or less severe with safety glass, which breaks into uniform, harmless fragments. Kimia is now investigating two similar safety threats: glass thermometers and Christmas ornaments.

Photo: Javier Amador-Peña

How adult television content influences behavior
A new study by Children’s researchers found that the earlier children are exposed to content in television and movies that is intended for adults, the earlier they become sexually active during adolescence. “Television and movies are among the leading sources of information about sex and relationships for adolescents,” says Hernan Delgado, MD, fellow in the Division of Adolescent/ Young Adult Medicine at Children’s and lead author of the study. The researchers encourage parents to follow American Academy of Pediatrics television viewing guidelines for their children and have an open dialogue about its content. (Also read “Media Myth-busters” on page 10.)

gwen and her epileptologist, Blaise Bourgeois, MD, after her life-altering surgery.

performed a dramatic procedure, called a Wada test. Injecting an anesthetic, they put one whole side of Gwen’s brain to sleep, causing the opposite half of her body to go briefly limp, as if she’d had a stroke. They then repeated these steps on the other side of her brain. While each side was temporarily shut down, Gwen tried to perform tasks, like moving her arms, counting and remembering images. Sure enough, she couldn’t speak or remember when her brain’s left side was asleep. This let Bourgeois know which side of the brain contained the damaged tissue, but surgeons would need would need a detailed map of her brain’s functions—millimeter by millimeter—to remove that tissue. So they opened Gwen’s skull and placed thin strips of silicon, studded with 108 electrodes, directly on her brain. “It’s the most accurate data you can get,” says Bourgeois. After the nearly five-hour operation, Gwen awoke to a headache and scores of fine wires coming out of her head recording her brain activity. A few days later, doctors performed a cortical stimulation test; they asked her questions while applying small shocks to each electrode in turn, temporarily rendering that part of her brain useless. If she failed a task, doctors knew that they’d tapped the part of her brain used for that thought process. Results were good: They zeroed in on the epilepsy, and the areas right around it didn’t seem to be used for language. But whether Gwen’s memory would be safe was still unclear. With the “blueprint” of Gwen’s brain in hand, the team began an hours-long debate about whether to go ahead with the brain surgery. Neurologists, neurosurgeons, radiologists, nurses and psychologists More at chILdrenShoSpItaL.org/dreaM/SuMMer09

Poor children fare worse after heart transplant
Children from lower socioeconomic neighborhoods who had a heart transplant were more likely than those from higher socioeconomic areas to die or need another heart transplant, according to new research. “This is the first time that low socioeconomic position has been associated with a higher risk of graft failure,” says Tajinder Singh, MD, lead author of the study and a transplant cardiologist at Children’s. Although all patients had health insurance and access to care and medications, children from low socioeconomic neighborhoods were 2.4 times more likely to have graft failure after transplant when compared to the controls, and minority children were 2.7 times more likely to suffer graft failure when compared to white children. “Improving the outcomes of heart transplantation in the lower socioeconomic status children requires new strategies and interventions for patients, families and the medical system,” says Singh.

Discrimination and mental health issues
Perceived racial or ethnic discrimination is not an uncommon experience among fifthgrade students, and it may have a negative effect on their mental health, found a new study. Fifteen percent of children in the study reported experiencing discrimination, and those children were more likely to have symptoms of depression, attention-deficit hyperactivity disorder, oppositional defiant disorder or conduct disorder. “It’s concerning that children this young are already reporting that they have faced racial or ethnic discrimination,” says author Mark Schuster, MD, PhD, chief of Children’s Division of General Pediatrics. “We need to examine what they are experiencing and how to address this issue.” More at chILdrenShoSpItaL.org/dreaM/SuMMer09 	 	 or more on research at Children’s, visit childrenshospital.org/vector F 	 	 hy do people with Down syndrome have less cancer? W 	 	 lues about how blood forms could yield new strategies for treating blood diseases C

	 	 ead about the research projects Gwen participated in while at Children’s R 	 	 ead about a patient whose intractable epilepsy required her to have half her brain removed R 	 	 earn about Children’s efforts to curb damaging seizures in newborns L

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MEDIA My t h - bustErs
By Erin Graham here’s no question that American children are growing up with unprecedented amounts—and forms—of media. Research shows that they spend more than six hours a day online, on cell phones, playing video games, listening to iPods and watching TV and movies. But the short- and long-term effects of this overstimulus package are under debate: Are kids consuming media or are media consuming them? Some pundits insist that they boost knowledge, tolerance and self-image, while others claim they hamper the development of real-life social skills and leads to obesity and violence. Setting the record straight is the mission of Children’s Hospital Boston’s Center on Media and Child Health (CMCH) and its resident “mediatrician,” Michael Rich, MD, MPH. Rich’s team studies the diverse ways that media exposure impacts children, from tots to teens, by conducting its own scientific research and building a database of nearly 10,000 papers on the subject from around the world. Here, Rich sheds light on some widely held media misconceptions.

allow teens to work through social anxiety issues, learn to talk to people they’re romantically interested in and make friends in a relatively safe environment.” Rich particularly likes the fact that social sites foster a pervasive sense of equality, which can boost self-esteem. “On the Web it doesn’t matter if you’re a millionaire or a child, everyone has a voice,” he says. According to his research, social sites create an environment that helps teenagers navigate their path through adolescence, allowing them to explore questions like “Who am I? How do I fit into the world? What is the world like and how should I behave in it?”

says Rich. “Just imagine what we could be helping children learn if nine out of the 10 best-selling video games didn’t reward players for violence.”

Down time is wasted time

My child will fall behind if she doesn’t use media early on

T

I can make my baby a genius

Well-meaning parents are prone to introducing children to computers, TV and—when they’re a bit older—cell phones, to give them a head start on getting tech savvy. But most of these efforts are, apparently, to no avail. “There’s really no getting ahead, since kids develop at a certain biological rate,” says Rich. “Parents can actually put kids at a disadvantage by exposing them to technology they won’t be able to understand or use effectively, since it isolates them from much more developmentally positive tasks, like interacting with others.” Similarly, many optimistic parents assume that if they introduce their child to computer or TV programs designed for older kids, they’ll learn more. “Virtually all parents are convinced that their 3-year-old is smart enough to watch or do something designed for a 5-year-old,” says Rich. “But even if their child really is smarter than the average bear, it flies in the face of basic biology. It’s like saying, ‘My newborn is smart enough to walk.’” Another reason to keep kids away from media for older kids is that they can be incredibly frightening. “Cognitive psychology tells us kids under 7 are incapable of distinguishing fantasy from reality,” says Rich. “So to them, Wyle E. Coyote plummeting to the bottom of a canyon has the same gravitas as the World Trade towers crashing down.” CMCH studies suggest that it’s not just the quantity but also the quality of TV children watch that affects their social relationships and learning. For example,17-yearolds who watched small amounts of educational TV at ages 3 to 5 placed more value on achievement, read more books and had higher grades as teens. Those who watched entertainment TV at the same ages had lower grades. While these statistical correlations are consistent, they don’t prove a causal relationship, Rich cautions. “Many factors contribute to a child’s development and achievement,” he says. “What this research shows is that the content of television they view may independently contribute to the effects of other factors.” The research on video games isn’t all gloom and doom either. Quality matters here, too. “Video games that give children a series of problems to solve and offer ways to practice responses in a virtual environment are among the best educational tools available to us today,”

Today, the pressure to fill up children’s lives with stimulation seems inescapable. But kids need time to take in what they’ve learned. “The problem is that the constant stream of stimulation doesn’t give them time to reflect, synthesize or figure out what it is they’re perceiving,” says Rich. While the jury is still out on whether attention disorders can be acquired or aggravated due to hyper-stimulation, Rich posits that it does play a role. “There’s good evidence that so much stimulation negatively affects children’s creativity and their ability to persevere,” he says. Too much manufactured fantasy leaves no room for the more productive, home-made variety, he contends. “I worry about kids who are asked in school to create their own imaginary world—without having it be pre-processed for them. I like to reassure parents that there’s value in just letting kids daydream.” More at chILdrenShoSpItaL.org/dreaM/SuMMer09 	 	 ips on maintaining a healthy media diet T 	 	 earn more about the Center on Media and Child Health L 	 	 atch a video about Ask the Mediatrician, an online W resource for parents with questions about media use 	 	s there a benefit to babies watching TV? I

Countless books and videos claim they can turn infants into veritable doctors in diapers. Does any of it hold water? According to Rich’s research, no. “The socalled ‘smart baby’ products show no evidence of helping babies learn,” he says. “Baby Einstein products aren’t better than putting a child in front of a mobile or giving them a puzzle—and they may actually slow or delay some aspects of brain development.” Babies’ brains triple in volume during their first two years, making billions of synaptic connections in response to environmental stimuli. Face-to-face contact with another person is shown to build these strong connections, as are interactions with the physical world (like stacking blocks) and problem-solving play. “The problem is that these baby programs don’t provide any of those key brain-building stimuli,” says Rich. “In fact, we’ve seen that 8- to 16-montholds who watch baby videos can actually have language delays.”

All TV and video games are bad

Social networking sites are a waste of time

While they do contain pitfalls that call for parental guidelines, online communities can also provide teenagers with positive, enriching experiences. “They offer opportunities for teens to expand their human connections and awareness of the world,” he says. “Many sites

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Four-year-oLd JacK’S language and social skills
have skyrocketed after two years of intensive behavioral interventions.

Arresting autism
t the far end of the basement playroom, Jack Irzyk, 4, smiles as he bobs up and down to the beat of a popular radio tune. He runs his fingers over the corrugated speaker of his boom box, feeling out the texture; once in awhile, he snaps the tape player open and closed. Alone, with his hand on the radio dial, he’s content. “It’s easy for him to relate to music,” explains his mother, Lea Irzyk. “He can control it—music happens on his own terms.” While Lea was pregnant with her second son, Joe, she noticed that Jack wasn’t developing like other boys his age. His language was slow: although he could make sounds representing the entire animal kingdom, at almost 2, he could not say “mama.” He was a finicky eater, and the texture of fresh fruits and vegetables provoked a gag reflex. But it was his social skills that led Lea and her husband Bob to believe something wasn’t right. While their friends’ kids would tear around the house, playing chase, Lea would often find Jack lying on the floor by himself, his eyes fixated on the wheels of his toy train as they spun around and around. Instead of engaging his peers, “he would zone out and just stare at nothing,” says Lea. Two months after Joe was born, Jack was diagnosed with a less severe form of classic autism, called Pervasive Developmental Disorder–Not Otherwise Specified, or PDD-NOS. Clinicians now view autism as a spectrum of neurological disorders, characterized by deficits in social interaction, impaired language, and/or repetitive or restricted behavior. Called autism spectrum disorders (ASDs), they’re the fastest growing set of serious developmental disabilities in the United States. According to the Centers for Disease Control and Prevention, one of every 150 children will receive a diagnosis of the disorder by the time they are 8—a rate 10 times higher than it was in the 1980s. Some attribute this hike to a loosening of diagnostic standards and enhanced screening; others believe there’s been a substantial increase in cases. Sixty years after it was first recognized, there are still more questions than answers about the disorder. But despite the elusiveness of autism’s causes, there’s a consensus among clinicians that treatment should begin as early in life as possible. Many experts suggest that there’s a crucial window of plasticity in the child’s developing brain when interventions are most effective. Treatments vary depending on the needs of the child; typically, children undergo a combination of intensive behavioral therapy like Applied Behavioral Analysis (ABA) therapy, in which clinicians teach children basic social skills by breaking them down into the smallest steps possible, and speech and language therapy. Lea and Bob dropped everything to get Jack into as many services as possible. “We went through what we call a functioning denial,” says Lea. “We didn’t want to believe the diagnosis, but we had no time to waste.” And then there was the question of their newborn,
Dream | Summer 2009 | childrenshospital.org/dream

Researchers probe the infant brain for clues

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By Melissa Jeltsen

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Dream | Summer 2009 | childrenshospital.org/dream

Photo: Webb Chappell Illustration: Stuart Briers

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“We went through what we call a functioning denial. We didn’t want to believe the diagnosis, but we had no time to waste.”
—Lea Irzyk, mother of Jack and Joe Irzyk

Joe. Because genetics plays an important role in autism, a sibling of a child with autism has up to a 20 percent chance of developing an ASD. Would Joe have autism as well? And if so, would there be a way to detect it earlier so interventions could begin?

Studying siblings

Charles Nelson, PhD, director of the Laboratories of Cognitive Neuroscience at Children’s Hospital Boston, is committed to answering that question. By studying the brain development of babies with a higher risk of autism, like Joe, Nelson hopes to discover early indicators that could be used to identify autism in infants. Unlike some serious childhood illnesses, like leukemia, there are no blood tests or scans to detect autism, so doctors are left to diagnose it by observing behaviors. Although children with autism are typically diagnosed around age 3 or 4, researchers have found that subtle symptoms

can be detected in children much earlier in life, sometimes even before age 1. In 2007, the American Academy of Pediatrics formally recommended that doctors screen all children for autism at 18 months and 2 years, in a concerted effort to get children into treatment as early as possible. But relying on behavioral measures to identify autism is tricky in children that young, and even harder in infants. “There’s a fine line between deciding if something is abnormal or just different,” says Nelson. Development varies enormously from one child to another, and many of the early signs of autism, like being fussy and difficult to feed, are exhibited in typically developing kids. Some of the telltale behavioral indicators of autism, like not responding to one’s name when called, aren’t applicable until age 1. “The behavioral repertoire of a young infant is limited,” says Nelson. “But that doesn’t mean things aren’t going on upstairs.” By using imaging tools to look directly at the brain, Nelson hopes to find subtle indicators of autism long before the disorder manifests behaviorally. “The development of language can be witnessed in an infant’s brain long before it is expressed,” says Nelson. These brain studies are coupled with behavioral studies, using a series of standardized tests. Nelson believes that making an accurate prediction of autism in infants won’t hinge on a single behavioral measure or neurological test result, but rather a collection of atypical signs. The infants are videotaped while they play with toys and interact socially, allowing researchers to scrutinize potential clues. Parents also fill out an online diary noting the infants’ behavior each week, which they share with the researchers. “The parents might recognize signs of autism in their children before the age of 1, because of their experience with their other child,” says Nelson. The infants are followed to 36 months of age and the lab tracks which children develop ASDs. Nelson believes that if he can find reliable markers for autism at 6 months, new interventions can be developed. “The term ‘intervention’ is a misnomer,” says Nelson. “If we do it early enough and it’s that successful, it might actually be prevention.”

In his lab, infants are shown alternating photos of their mother and a stranger, while sensors lightly placed on the baby’s head record their brains’ responses; in addition, a specially constructed eye tracker records where the baby looks. Nelson’s earlier research with typically developing children found that the picture of the mother elicits a larger brain response (which signals attention) than the picture of the stranger. “We can see within four-tenths of a second that the child has recognized their mother,” says Nelson. But in examining the brain activity of the high-risk infants, he noticed their brains didn’t recognize faces in the same way. They responded more slowly to their mothers’ faces, and the area of brain that was activated differed from that of the low-risk infants. Another neurological test examines the way babies begin to process language. “One of the hallmarks of autism is a language delay,” says Vanessa Vogel-Farley, a research coordinator in Nelson’s lab. In normally developing babies, previous research demonstrated that at 6 months old, babies can distinguish sounds in virtually any language, but by 1 year, they can only discriminate sounds in their native language. That specialization to the native language is a normal step in acquiring language, says Vogel-Farley. “The developing infant brain is like a sponge,” she says. “It adapts extremely fast to the language it hears every day.” As the brain becomes an expert in the native language, it stops being able to understand other languages. Preliminary results show that the brains of high- and low-risk infants respond differently to the language test, but the study hasn’t had enough participants to show any conclusive outcomes yet. Although Nelson emphasizes that it’s early in the study, these findings suggest facial processing and language skills may be corrupted at a very early age in children with autism. It’s possible that in the future, these crucial growth skills can be tested in babies with a sibling with autism to ascertain if they too will develop the disorder. Sitting on the floor, Joe, now 2, plays with his blocks. He picks up a plastic triangle and tries to fit it into a circle-sized opening without success. His mother picks up the circle and deliberately feeds it though the hole with an exclamation of “Pop!” Joe catches on, and imitates her without a pause. According to traditional behavioral measures, Joe does not appear to have autism like his older brother, but he will continue to be part of the study for one more year. Nelson’s next step in his research will be to add a genetic component to the project, which should help in creating a more complete picture of autism. “We want to collect genes from the families to add to the imaging and behaviors to create a profile,” he says. He will team up with the Children’s Hospital Informatics Program (CHIP) to pull the data together in a meaningful way. After two years of intensive behavioral therapy, Jack is in preschool, where he learns with six other boys with ASDs. Each week, he spends a half hour in a regular classroom so he can model the behavior of his peers. The

watch children’s autism experts and families on nova sciencenow
The autism work of Charles Nelson, PhD, director of the Laboratories of Cognitive Neuroscience (right), and Takao Hensch, PhD, senior research associate in Neurology (above), is featured in “Genetics of Autism” on NOVA scienceNOW on Tuesday, July 7 at 9 pm on WGBH-TV locally, and on PBS stations nationwide (check local listings). “Genetics of Autism” features pioneering scientists who are using gene chips that can scan up to a million genetic markers across the entire human genome. They’re on the hunt for the genetic key to autism, a heartbreaking disease that seems to come out of nowhere, and yet affects millions of children and their families. 		pbs.org/novasciencenow

Living with autism

Irzyks aim to have him fully integrated by kindergarten. “If he’s not ready, we’re not going to push it,” his mom says. Organizing and planning Jack’s therapies can be time consuming (he has two hours of ABA therapy every weekday, occupational therapy twice a week and speech therapy once a week), but the improvements in his language and social skills are striking. “It’s incredible,” says Lea. “He’s a totally different child now.” Sometimes, she and her husband imagine what Jack’s development could be like had he been diagnosed with autism before age 2. “After treatment began, Jack’s development skyrocketed,” she says. “We wonder, what if we caught it 6 months earlier? Time is really of the essence.” More at chILdrenShoSpItaL.org/dreaM/SuMMer09 	 	 atch a video about the autism infant sibling study and W see Jack and Joe in their home environment 	 	 earn more about Children’s research on how the brain L forms connections, and its implications for understanding autism 	 	 ead a story about Charles Nelson’s research on the R impact deprivation has on the brain—and whether its effects can be reversed 	 	 atch Charles Nelson, PhD, discuss autism W

Facial cues

Before infants acquire language skills, most communication is non-verbal, which requires them to decode facial signals. From birth on, babies are naturally inclined to look at and focus on faces. “Babies just like faces,” says Nelson. But the ability to understand and interpret facial expressions appears to be damaged in many people with autism. Nelson wondered if the infants who would go on to develop autism would exhibit atypical brain activity when shown pictures of faces.
whILe JacK (on LeFt, StandIng) prefers to play alone and Joe loves company, the brothers still know how to have fun together.

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Dream | Summer 2009 | childrenshospital.org/dream

Dream | Summer 2009 | childrenshospital.org/dream

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