The Tafts have turned Erica's gluten-free diet into a family affair.

Although my husband called her “Smiley,” our happy baby, Erica, was clingy and cranky. For two months, we cleaned up after our 22-month-old as she vomited every day and watched in growing alarm as her tummy grew more and more distended, while her arm and leg muscles atrophied. Her pediatrician thought she had a virus, but she wasn’t getting any better. After four weeks, he referred us to Children’s Hospital Boston, where her gastrointestinal doctor suspected celiac disease.

A blood test and endoscopy confirmed it, and the diagnosis brought relief. The disease was causing Erica’s immune system to damage the villi in her small intestine, resulting in her body’s inability to absorb nutrients. The prescription was simple: All we had to do was eliminate gluten, a protein found in wheat, rye and barley, from her diet. But my husband, Sandy, and I were overwhelmed and at a loss. What could Erica eat? What would we eat? Giving up rye and barley would be easy, but not wheat. Our family ate a lot of pasta and pizza, crackers and pretzels. I thought Erica would never have an easy-bake oven, go out for pizza or bake chocolate chip cookies.

I threw away every food with wheat: flour, crackers, bread, cookies, soy sauce. I began giving away my favorite baking cookbooks and scrubbed every pan. I bought a new toaster and forbade my husband from putting wheat toast in it. The gluten-free tapioca bread I bought at the health food store tasted like cardboard, the specialty crackers crumbled and the wheatless cookies had an after-taste. Keeping gluten-tainted crumbs away from the gluten-free food was stressful, so for the first few months, the whole family ate gluten-free. It wasn’t easy, but it worked: As we rid wheat from her diet, Erica’s demeanor began to change and she was happier. Once again, she deserved the nickname Smiley.

Our lives had changed. We ate out less frequently and found it difficult to be spontaneous. We had to be assertive at restaurants, holiday gatherings, birthday parties and, later on, at schools. Not everyone was understanding and helpful. But then our lives changed again. Our nutritionist at Children’s introduced us to the hospital’s Celiac Support Group. Here, the parent of another patient said, “I’m sorry,” when I told her my daughter had been diagnosed. I realized she was recognizing my grief and my loss. A few months later, I sat at a support group meeting listening to a social worker describe the five stages of loss and explaining how people with celiac disease experience those stages. It was comforting to know that my feelings were not unusual. In fact, they were expected, especially the first year on the diet.

The group offered education, resources, tips, discussions about research, recipes and, best of all, friends for me and for my daughter who completely understand what it’s like to live gluten-free. I learned where to buy gluten-free products and which restaurants had gluten-free menus. I was introduced to list-servs and Web sites and was able to sample and buy gluten-free products at meetings. I discovered a whole new way of baking through their recipes and cooking demonstrations.

While these meetings continue to inform me, it’s the people who make the group so worthwhile. Erica and her gluten-free friends decorate cookies and dance at the annual holiday parties, swim and scramble for piñata candy at the summer picnic, and play games or participate in a scavenger hunt with other kids at the fall and spring meetings. At these functions, Erica knows that she can eat everything. They are the only events where she doesn’t feel different or left out.

I have made friends as well. Zelia gave me the name of her favorite cake mix; Susan gave me her favorite pumpkin muffin recipe; Mary listened to my concerns; Sue gave me a cupcake holder; Maria recommended a cookbook. As I became more comfortable with the diet and the disease, I began sharing what I’ve learned with newly diagnosed families. I hosted a gluten-free holiday cookie swap and made gluten-free ice cream sandwiches for a few of the kids we’d met. After six years of mostly taking, I decided it was my turn to give, so I joined the board.

I’m now co-chair of Children’s Celiac Support Group, and while I enjoy editing the newsletter and making sure the events run smoothly, I find connecting people and helping them discover that they’re not alone to be the most rewarding. When the moderator of our expert panel at our members’ forum asked how many people in the audience were new members, 75 percent raised their hands. I knew then that everything we’d done to make that meeting happen was worth it.

When Erica was diagnosed, my family entered a whole new world we didn’t know existed. People have helped us, and we’ve helped others. My son, Tommy (12), and Erica (now 10) look forward to arriving early at group events and helping to set up. Erica has written for the newsletter, Tommy has helped with childcare and Sandy has acted as moderator. With so much information available now over the Internet, I’m sure there are some people who don’t feel it’s necessary to join a support group, yet being part of one has had a tremendously positive impact on our lives. My daughter has learned to overcome adversity, and both my son and daughter have learned the rewards of helping people. Although living gluten-free can still have its challenges, being part of a support group has made all the difference.

A new study shows that gluten free camps are extremely helpful for kids with celiac disease.

For more information on celiac disease, watch these helpful videos.

By Jonathan Kraft, president of The Kraft Group and New England Patriots

As a long-time supporter of stem cell research, I’m proud to announce the launch of a new Children’s Hospital Boston Web site that we hope will demystify the science of stem cells and answer some of the public’s questions about them. For the past three and a half years, my wife, Patti, and I have served as co-chairs of Children’s Hospital Boston’s Stem Cell Task Force because we believe that stem cells hold incredible promise for the future of health care. During this time I’ve gotten to know Len Zon and George Daley, the two physician-scientists who head up the hospital’s Stem Cell Research Program, and I believe that the work they are doing will revolutionize health care.They’ve explained to me how stem cell research will open the door to each of us creating our own personalized repair kits, a way in which we could replace damaged cells with healthy cells, potentially eliminating years of pain, suffering and devastating economic consequences from diseases that now take a heavy toll on all of us. We could vastly improve the quality and length of our lives and especially those of our children.

Jonathan Kraft, president of The Kraft Group and New England Patriots

In talking with Drs. Zon and Daley, I’ve come to believe that there’s no greater opportunity to change science and medicine – and improve and save lives – than through stem cell research. As a businessman, I know the economic cost of maintaining the status quo versus investing in change. The United States is spending trillions of dollars each year to treat – not cure – diseases like diabetes, sickle cell anemia, ALS and Alzheimer’s. Stem cell therapies that are currently in development provide a very real opportunity to cure these diseases.

Today, on the one-year anniversary of the government lifting the ban on federal funding for stem cell research, Children’s is launching a new Web site that will be filled with information that we hope will help the public better understand the science at the core of all of our efforts.

I am convinced that stem cell therapies will deliver better medicine at a lower cost to society and, based on their extraordinary achievements in the field, I am supporting the work of Drs. Zon and Daley because no team is better positioned to realize the tremendous potential of stem cell research.

If your adolescent child has been exposed to secondhand smoke, he may already have heart disease. That’s the message of a new study published this month.

Researchers in Finland followed around 500 children from age 8 to 13. Every year they did a blood test that measured their exposure to tobacco smoke in the previous few days. At age 13, they looked at the arteries of the children using ultrasound, to measure their thickness and health, and measured their levels of Apolipoprotein B, which gives a direct measure of the lipoproteins that can cause heart disease. They found that healthy 13-year-olds with exposure to tobacco smoke between 8 and 13 had thickening of the major arteries and higher levels of Apolipoprotein B. While the effects were worse in the kids with the highest exposure to tobacco smoke, they were present in kids with even modest exposure.

This is scary stuff—especially when you add it to what we already know about the dangers of secondhand smoke:
•    According to the American Cancer Society, each year it cases 46,000 deaths in non-smokers who live with smokers, and 3,400 lung cancers in non-smoking adults
•    Every year, it causes between 150,000 and 300,000 lung infections in children less than 18 months old, leading to between 7,500 and 15,000 hospitalizations
•    Children with asthma who are exposed to cigarette smoke have more frequent and severe asthma attacks
•    Children living with smokers can have slower lung growth
•    Secondhand smoke is responsible for more than 750,000 middle ear infections in children every year
•    Exposure to cigarette smoke increases the risk that a baby will die of Sudden Infant Death Syndrome (SIDS)
•    Exposure during pregnancy (just exposure—the woman doesn’t have to smoke herself) can lead to low-birthweight babies
•    While exposure to the actual smoke is the most dangerous, more research is suggesting that the particles that get into things like hair, clothing and furniture (those particles that make people smell like cigarette smoke) are toxic as well—so smoking away from people may not be enough

It’s no surprise, then, that a 2006 Surgeon General’s report said that there is no safe level of exposure to secondhand smoke. But despite this, exposure is still happening—in the workplace, in public places, in far too many homes and in cars (for those who think that rolling down the windows makes smoking in the car okay, a study from New Zealand showed that even with the windows down, the exposure was the same as in a smoky bar!)

It’s time for zero tolerance. Here’s how we can start:
•    If you smoke, quit.  You don’t really want to hurt the people around you, do you? I know that it’s not that easy—but there are treatments that can help. Talk to your doctor.
•    Boycott the houses of people who smoke.  I know this sounds rude, but what’s more important: being polite, or the future health of your family? And who knows, when Grandma or Uncle George realizes that you are serious about not visiting with the kids, it might just be the impetus they need to quit.
•    To the extent that it is possible, don’t let your children be around cigarette smoke. Before you say yes to a playdate, ask if there’s anyone who smokes—if there is, have it at your house instead. Don’t go to restaurants that have a smoking section. Avoid public smoking areas.
•    Support smoke-free policies in the workplace and your community. The goal should be for all workplaces to be smoke-free. Nobody should be forced to take a health risk in order to make a living!
•    Talk to your kids about smoking. According to a 2007 CDC survey, 20% of high school students smoke. That’s better than 23% in 2005, but still too high. Make sure your kids get the message loud and clear from you that smoking is a really bad idea (if you smoke yourself, it’s going to be hard to get that message across!)

Working together, we can make a difference—and we have to.  The lives of our children are at stake.

Whether it’s Chocolate Cheerios advertising that it “may reduce the risk of heart disease”, Juicy Juice claiming it aids “brain development” or Nestle’s Drumsticks showcasing it has “0g Trans Fat” but leaving out that eating them may actually help make you fat – the Food and Drug Administration (FDA) is fed up with false and misleading claims on food labels.

The FDA has sent out a group of letters warning companies about their misleading advertising practices. The commissioner of food and drugs, Margaret Hamburg, M.D., stated on the FDA’s website, “Today, ready access to reliable information about the calorie and nutrient content of food is even more important, given the prevalence of obesity and diet-related diseases in the United States.”

The FDA sent out 17 letters in total addressing the questionable labeling on 22 food products. You can view a list of all of these products on the FDA’s website.

by Dennis Rosen, MD – Associate Medical Director of Children’s Sleep Laboratory

A lot of research has been done about how not getting enough sleep affect someone’s ability to function. Whether this is shown in how someone performs on tests measuring cognitive abilities, behavior or even behind the wheel of a driving simulator (and responding worse than some whose blood alcohol levels exceed the legal limit), the results all support the premise that getting enough sleep is crucial if someone wants to achieve their full potential.

A new study has found that sleep deprivation interferes with people’s ability to distinguish between the facial expressions of others, specifically to determine whether they are happy or angry.

In this study, 20 people were deprived of sleep for 30 hours and then asked to look at photographs of faces, each displaying a different emotional state – happy, sad and angry – at various levels of intensity. Then they were allowed to sleep and retested 24 hours later. The responses from both days were compared, as well as to those of another group of 17 people who served as controls, undergoing the same testing two days in a row without sleep deprivation.

The researchers found that there was a significant weakening in the ability of those who had been tested while sleep deprived to distinguish between angry and happy facial expressions in the moderate intensity range. This difference disappeared after recovery sleep and was greater in women than in men.

What is the significance of these findings? First, they expose yet another area in which getting enough sleep is critical for normal daily function. They may also explain why overtired children become especially grumpy and moody and are just generally less pleasant to be around the more sleep deprived they are. Some of this may result from a decrease in the ability to accurately interpret messages and signals being given by family members, resulting in exaggerated or even inappropriate responses.

One question that arises which I find especially intriguing is what this may mean for children (and adults) with autism, who by definition have difficulties interpreting social cues. It is known that the prevalence of sleep disorders in children with autism is much higher than in the general population. So, one could ask whether the sleep disturbances seen are solely a consequence of the autism, or whether they not only coexist, but also play a role in strengthening some of autistic features. If that is the case, perhaps we should be more aggressive in treating sleep disorders in this population.

While the numbers in this study were small, it certainly raises many important questions, which will no doubt continue to be looked at going forward.

Read more of what Rosen has to say on children and their sleep on his blog, Sleeping Angels.

Here’s a quick look at what Thrive was up to last week.

Do you know how dangerous drowsy driving is for your teen? Teen brains really are different. Parents consider hastening death for terminally ill children. Do small changes in our diet really add up? Children’s Facebook page is named one of the best hospital pages. A Children’s critical care nurse tells her story about caring for Haitian earthquake victims on the USNS Comfort. Do you know how to recognize the early signs of autism? Learn why it’s important for young boys and girls to see female characters on screen. Children’s hearing needs to be protected beginning at a very young age.

Other stories we’ve been reading:

Read one father’s story on how he became an advocate for safer teen driving. Check out these safe driving tips for your teen. [Read about the dangers of drowsy driving.]

Advertising guilt doesn’t curb binge drinking. Teen alcohol and marijuana use is on the rise. [A recent teen drug survey predicted this.] Young people who smoke marijuana for long periods of time are more likely to risk psychosis.

Despite studies proving otherwise, some parents still believe that vaccines cause autism. Gene therapy is closer to restoring eyesight to blind patients. [Read about how a novel surgery saves one baby’s vision.] A blood test can help sort out milk allergies. [Watch Brett go through a milk exposure desensitization trial.]

Screening athletes could prevent sudden deaths. [Read a Children’s cardiologist’s views on screening athletes for heart disease.] Check out this list of the best Wii workout games. Educational videos don’t help babies learn. [Read about Disney giving refunds on Baby Einstein videos.]

A new study suggests that BPA may raise the risk of asthma in kids. [Read what every parent needs to know about BPA.] Household dirt won’t raise the asthma risk in infants. Childhood cancer survivors are at an increased risk of bladder tumors.

Kids are snacking about three times a day. [Take a look at these healthy snacking tips for kids.] Sleep habits determine fat gain in younger adults. [Does sleeping late keep your kids slim?] Obese kids are more prone to certain injuries.

Amazingly, bullying numbers are down. [How can you address bullying?] The House voted to protect students against abusive discipline. Mouth-to-mouth CPR is better for kids.

Children’s Brian Fligor, ScD, CCC-A, director of diagnostic audiology, is quoted in a recent article by The New York Times about the importance of protecting your children’s hearing.

Hearing loss from exposure to loud noises is cumulative and irreversible; if such exposure starts in infancy, children can live half their lives with hearing loss.

Learn more about the signs of hearing loss in your children and how to care for children with hearing loss.

by Dafna Lemish, PhD

Actress Geena Davis’s recent speech to the United Nations highlighted a concern that researchers of children and media have been speaking about for many years. The programs on the screens our children view – on television, computers, movie theaters or even their mobile phones – portray a world of gross gender inequality: Girls still appear marginal to society.

Indeed, a recent study of children’s television in 24 countries, including the United States, found that there are two boys on average for every girl character. Furthermore, girls and boys continue to be represented in traditional, conservative and stereotypical ways: Girls appear largely as emotional and passive, hypersexual, and are overly concerned with consumption, beautification and romance. Boys are portrayed as aggressive, adventurous, rational, technologically-oriented, risk taking and “womanizing.” The more exciting stories and challenging adventures in the media still happen to boys rather than girls.

Dafna Lemish, PhD

Most of the video, computer games and even television programs continue to be oriented towards boys’ tastes and interests. The media industry continues to operate under their working axiom: Although girls will watch boys’ shows, boys will not watch girls’ shows. Therefore, they would rather cater to boys.

In addition, commercial corporations continue to divide and drive boys and girls into two different media worlds by assigning different toys, clothing and games for each. Have you noticed recently how the aisles in the big toy stores are divided between the girls’ pink area and the boys’ metallic-grey-blue one?

While these are all well-documented facts, researchers are only now learning about the long term implications of this situation for our children’s well-being and healthy development. Some of the questions we are studying include:

• What kind of role models do these stereotypical images of boys and girls provide our children?
• What kind of aspirations do they foster?
• What do they tell children about whom they are and who they can strive to become?

What we do know from earlier studies is that when presented as marginal to the narrative, as a passive minority mainly concerned with appearance and attracting boys, girls learn that this is the way society values them. These studies demonstrate that girls learn from media images to experience themselves as inferior and to limit their ambitions for themselves and for their futures.

Boys, on the other hand, internalize the pressure to be “muscular,” “daring,” in control of their emotions and of others (people, animals and technology alike). While girls learn that their most important quality is their sexual appeal, boys learn that they are defined by their aggressiveness. These are not the kinds of lessons that promote a healthy sense of self or a humane environment for fostering mutual respect.

Furthermore, these gender-segregated childhoods provide different contexts for children’s social development. Such an environment does not necessarily prepare them for mutual understanding and collaboration. Nor does it foster common interests, friendships and recognition of such basic human commonalities as:

• Both girls and boys are children who share the same challenges, aspirations, morality, dreams and hopes
• Children of both genders need love and friendships, have adventures and overcome difficulties
• Both are curious and eager to explore their surroundings, and both struggle with their multiple identities
• Both sets of children are trying to carve their place in the world

The good news is that awareness to these issues is growing. There is an expanding body of knowledge about the images of gender in media and we are learning more and more about their implications

A lot of these efforts are available on Children’s Center on Media and Child Health’s website. Geena Davis has established an advocacy and research institute that focuses on gender equity in films and television. Many producers of quality television, internet sites and computer games are working towards changing these images and seek to create a more healthy media environment for children.

My own work in this area has documented many ways by which we can contribute to this process of change. But most importantly, the adult members of our families can make a difference in the everyday choices we make for our children’s media exposure –

• In the movies we take them to
• Computer games we encourage them to play
• Television programs we watch with them
• And comments we make about sexist images or aggressive boys

It’s the fastest growing developmental disability in the United States—and in the majority of cases, no one knows what causes it. According to the CDC, the prevalence is now one in 110 kids—an astounding 57 percent increase since 2002.

Despite the lack of concrete answers about autism, which is now seen as a spectrum of neurological disorders, characterized by deficits in social interaction, impaired language, and/or repetitive or restricted behavior, there is 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.) That’s why getting a diagnosis as early as possible is important.

While children with autism are typically diagnosed around age 3 or 4, researchers have found that subtle symptoms can be detected much earlier in life, sometimes even before age 1. Now a new study affirms that the social disengagement that is typical of people with autism does appear in the second half of a baby’s first year of life. But, in a surprising twist, the study also found that parents usually don’t recognize the decline in their child’s behavior until well into his or her second year.

From the LA Times:

But while the reduced rates of face-gazing, vocalizations and social engagement were evident to researchers who systematically evaluated the babies every six months, 83 percent of the parents did not observe the changes chronicled by researchers — not, at least, in the first year they were happening.

At Children’s Hospital Boston, Charles Nelson, PhD, director of the Laboratories of Cognitive Neuroscience at Children’s Hospital Boston, studies the brain development of babies, with hopes of discovering early indicators that could be used to identify autism in infants. He says it’s very tricky to rely on behavioral measures to identify autism 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.

Read about Nelson’s most recent study, which looks at infants with a sibling with autism.