Photo by Michael Bentley

Spring is finally making its way to Boston, and with it comes the wonderful outdoor activities that children wait for all winter. Riding a bike usually tops the list, and new research underscores the importance of wearing helmets—no matter how young the child, how short the ride or how safe the street.

A study in the Journal of Pediatrics, conducted by William P. Meehan III, MD, Lois K. Lee, MD, MPH, Rebekah C. Mannix, MD, MPH, of Boston Children’s Hospital, and Christopher M. Fischer, MD, of Beth Israel Deaconess Medical Center, shows that simply having helmet laws in place results in a 20 percent decrease in death rates and injuries for children younger than 16 who had been in bicycle-motor vehicle collisions. Research has already shown that people who wear helmets while riding a bike have an 88 percent lower risk of brain injury; but the first step is getting people to wear those helmets—and having laws can help.

These days, parents can be inundated with injury prevention information concerning their children, so legislation can be an important differentiator in helping parents adhere to best-practice guidelines. The American Academy of Pediatrics (AAP) recommends that all cyclists wear helmets that fit properly for each ride and supports legislation that requires all cyclists to wear helmets.

“There’s a lot of evidence that wearing a helmet when you ride a bike is a good idea. Our findings show that in places with helmet laws there were real benefits, including a reduction in mortality. That’s about the strongest evidence that I can think of,” says Fischer.

Photo: Ben Grey

Parents might think that helmets are a “sometimes” rule or that their streets are particularly safe, but Lee urges helmet use at all times.

“It’s just like when you’re in a car: You may be a safe driver, but you can’t account for other drivers around you, so you should still be prepared to wear a seatbelt at all times. Your kid may be great at riding a bike, and your street might seem safe, but you should still wear a helmet every single time,” says Lee.

Introducing helmets as early as possible—even when the child begins riding a tricycle—may create safe habits and reduce resistance later. Parents can also model safe behaviors by wearing helmets themselves.

“One of the most important things you can do is to make sure a helmet fits correctly,” says Lee.

Here are ways to make sure your helmet and your child’s helmet are as safe as possible:

• Wear the helmet on top of the head, not tilted back.
• Make sure the helmet fits snugly and does not block vision.
• Make sure the chin strap fits securely and that the buckle stays are fastened.

Helmets should not prohibit children from getting outside, riding bikes or enjoying the beautiful weather. But they will allow them to enjoy it more safely.

For more tips on injury prevention, visit Boston Children’s Hospital’s Sports Medicine Division website.

Amid the horrific news of the devastating destruction brought by the tornado in Oklahoma this week, there is one remarkable bit of good news: as of this writing, only 24 people died. While any loss of life is horrible, and that there were children among the dead is even more horrible, one look at the pictures makes it clear that many more could have died.

Why didn’t more die? Because they knew what to do.

Oklahoma is in Tornado Alley, so people there know the drill. Many had shelters they could climb into. Others did what you are supposed to do (at least the ones who could—not everyone was so lucky): they got to the lowest floor, away from windows and covered themselves as best they could. And they survived.

Along with making a donation to agencies supporting those affected by the tornado, a really good thing for all families to do is to make some disaster plans of their own. The Centers for Disease Control and Prevention (CDC) has a webpage to help families figure out what plans they need to make and how to make them. But here are a few things all families should do:

Make a fire escape plan. No matter where you live, you could have a fire. You should have smoke detectors on every floor (check the batteries regularly), as well as fire extinguishers (and teach family members how to use them). But even with those safeguards, everyone in your family should know how to get out of the house. Teach children to get low, to feel doors before opening them, which routes to use (there should be two out of every room), and…

Have a meeting place. You actually need two: one near your house, in case of something like a fire, and one farther away, should you not be home during the disaster. The one near your house should be obvious and easy to remember (like near the mailbox or at the driveway). The one farther away should be outside of your neighborhood, a place that everyone can remember and get to without too much trouble (a relative’s house, perhaps, or a public place. If it’s a place where someone can call (to say they are on the way or can’t get there), that’s helpful. Which is part of why you should…

Have a communication plan. People need to know how to reach each other. My friend, Dr. Wendy Sue Swanson, has some detailed advice about this on her blog this week. At a minimum, teach children at least one parent’s cellphone number (repetition is key, and putting it to music can help), and make sure they know to call. (Make sure they know 911 too.) Choose a friend or family member who isn’t local to be a contact person too—and make sure everybody has the number (in their wallet or backpack, for example). And be sure that you have backup people to get your children from day care or school. Spend some time together planning out how to contact each other (remember: texting is often better than calling) and who to ask for help. This is also a good time to talk with children about what to do generally if they get separated from you.

Have emergency supplies handy. Everybody should have a first-aid kit ready, but it’s a good idea to have some emergency supplies as well, such as water, flashlights, batteries, a multipurpose tool, medications, a radio, some ready-to-eat food, blankets and copies of important documents. The CDC has suggestions as to what to organize, as does Dr. Swanson.

Know how to shut off your water, electricity and gas. It’s usually not hard, and it can be really important to do.

Think about any special circumstances. Know about the risks in your area. If you have a disabled family member, you might need additional plans. Make a plan for your pets too.

Practice your plans. They aren’t any good if they are forgotten. So do fire drills, review phone numbers and communication plans and meeting places and refresh your emergency kit as necessary (look at expiration dates as you pack). Maybe put yourself on a schedule: mark a Review Day on your calendar. Pair it with something fun, like going out for ice cream. That way it will feel less scary—and might be more likely to happen.

Hopefully, you will never need to use a single one of your plans. But if you ever do, as many of the residents of Moore, Okla., will tell you, you will be so glad you have them.

After events like the Oklahoma tornado, emergency medical teams play a crucial role in helping people in need. Read what it’s like to be such a responder, in this blog written by a Boston Children’s clinician who also serves on the Massachusetts–1 Disaster Medical Assistance Team.

By Kipaya Kapiga

While Boston may be well-known for its great cuisine, the last thing a family traveling to Boston Children’s Hospital for long-term treatment is thinking about is fine dining. When parents care for a sick child in the hospital, it can be difficult for them to leave their child’s bedside to catch some sleep, let alone to take in the local fare. For more than a year, however, Boston Children’s has been working to change that by bringing the downtown Boston dining experience into the hospital.

Parents’ Night Out is a monthly dinner event for the parents whose children have a long-term stay at the hospital. Organized for families by Executive Chef Colin Targett, the dinner is an opportunity to enjoy excellent food and return a sense of normalcy to their lives without straying too far from their child’s side. Whereas most family events organized by the hospital facilitate interaction between the entire family, Parents’ Night Out puts the focus on providing parents a little quiet time just with each other. “We have all the time in the world to talk with other parents when we’re on the floor,” jokes Jolene Spry, the mother of 6-month-old Landen, a current Boston Children’s patient.

One of the dishes available at Parents' Night Out

For Jolene and her husband, Stacy, the event was more than a welcome distraction. Landen arrived at the hospital in late January to receive treatment from Boston Children’s Esophageal Atresia Treatment Program. Since then, their child’s treatment has left the Mocksville, N.C., natives with little time to explore any dining options beyond the restaurant chains near the housing that Boston Children’s has helped coordinate for them.

The event can be even more special when it coincides with a couple’s anniversary, which can be coordinated through Child Life Services, whose staff spends a considerable amount of time with long-term patients and handles the Parent’s Night Out invites.

“They weren’t able to go out because they have a child here,” explains June Mena, a Food Services cashier who served food alongside fellow cashier Bianca Lao to a couple celebrating their anniversary at the last Parents’ Night Out. “This was kind of a make-up for that.”

Targett, who flexes his culinary muscles to prepare interesting and delicious meals not normally offered at the hospital cafeteria, credits the inspiration behind the event to a conversation among the Food Management team about the parents of long-term patients, some of whom visit the hospital for months at a time. That conversation formed the basis for what was to become the first of many Parents’ Nights Out, launched by Patient Support Director Shawn Goldrick, Center

Boston Children's staff act as servers for Parents' Night Out

for Families Director Elizabeth Harding, LLB, RN, and Child Life Services Director Beth Donegan Driscoll, MS, CCLS.  “We were thinking outside the box and decided to do something special, so the parents could have a little bit of normalcy,” Targett explains.

It’s a recipe that, for the past 18 months, has worked well and become a signature piece of Boston Children’s care for both patients and family. Jim and Becky Penn, who traveled to Boston Children’s from Schenectady, N.Y., so their 3-year-old son Collin could receive a bone marrow transplant, agree.

“It was a very nice and beautiful setting overlooking the gardens,” says Becky. “It’s nice to forget that you’re in the hospital for a couple of minutes.”

When describing how most kids react to a plate of their least favorite foods, the term melodramatic would be an understatement.

“If I have one more bite of broccoli, I’m going to be sick!”

“Yuck! Spinach again? It makes me gag.”

But for a small portion of kids, these terms aren’t exaggerations; they’re medically accurate statements.

Cameron Ledin is one of those children. The 8-year-old was recently diagnosed with eosinophilic esophagitis (EoE), a severe allergic inflammation of the esophagus that causes his body to have terrible reactions to a wide range of foods. When a person with EoE eats, his immune system can mistake certain foods as invaders. This causes white blood cells to attack the throat, and can lead to terrible pain in the stomach, joints and head.

EoE is rare and difficult to diagnose, especially in young children who can’t clearly express what they’re feeling. Complicating things even more, EoE symptoms often change over time, or won’t occur for hours or days after the person has been exposed to a trigger food, making it hard to pinpoint exactly what caused an inflammation. With so many variables involved, differentiating EoE from other food allergies or gastrointestinal issues is very tricky.

In Cameron’s case, proper diagnosis took years of testing.

Losing the food fight

For a time Cam had to receive his nutrients via a tube

As an infant Cameron sneezed and rubbed his eyes whenever his mother Kim nursed him, so his parents brought him to see Boston Children’s Hospital allergists, who diagnosed him with food allergies. When he was old enough for solid food, he often refused to eat. This led to more tests, which revealed more food allergies. When he was old enough to talk he said his stomach hurt all the time—more tests confirmed even more allergies.

By the time he was 7 years old, Cameron could only eat 25 foods. And even then his pain and symptoms continued. When he could stomach eating, he had to chew his food to a fine, mealy paste so he wouldn’t choke if his esophagus seized up.

Sick with worry, Cameron’s parents took him to see the specialists at Boston Children’s Eosinophilic Gastrointestinal Disease (EGID) Program, a multidisciplinary clinic that treats children with conditions where high levels of eosinophils—a type of white blood cell involved in allergic reactions—affect one or more parts of the digestive system. There they met Eitan Rubinstein, MD, a doctor who specializes in kids like Cameron.

Rubinstein reviewed Cameron’s case and suspected EoE, but because the condition is so rare and difficult to fully diagnose, more testing was needed. Rubinstein performed an endoscopy on Cameron, which means he placed a small camera down Cameron’s esophagus and studied the inside of his throat and stomach. He also took small tissue samples to look for damage and inflammation associated with EoE. Cameron’s endoscopy and tissue samples proved to be the missing piece of the puzzle, and he was officially diagnosed with EoE.

Centralized care

Cameron has a whole team of doctors looking out for him at Boston Children's

Even though the diagnosis was serious, Kim was relieved to finally have a name for the illness that had troubled her son for so long. She also took comfort in knowing that the same specialized care team that diagnosed her son would also be treating him. Their team includes gastroenterologists and allergy specialists who work closely to understand and treat Cameron’s medical needs, as well as a social worker, a nutritionist and a nurse practitioner to help them adjust to the many aspects of life with EoE.

“Instead of seeing various specialists at different times, we now go to just one appointment at the EGID Program,” Kim says. “They manage every aspect of Cameron’s health. From Drs. Rubinstein and Lee, to his social worker, Yoshiko Okazaki, his nutritionist Tara McCarthy and nurse practitioner Julia Perkins—he has a whole group of pediatric experts looking out for him.”

Treat to eat

For children like Cameron, treatment generally falls into two categories: medication to reduce reactions, or dietary restrictions to avoid trigger foods.

Because no one is sure exactly which foods are making Cameron so sick, and so far medications haven’t been very effective, all of his nutrition currently comes from a special formula that he receives through a tube.

Dr. Lee and Cameron

But under the close watch of Rubinstein and John Jhe-Yun Lee, MD, co-director at Boston Children’s EGID Program, Cameron is undergoing food trials where he adds one solid food per week to his diet, in hopes of using a process of elimination to figure out exactly which ones his body can—and can’t—tolerate. The trial foods are specially identified by Lee, based on testing, his personal knowledge of Cameron’s case and his background as an expert in allergic gastrointestinal disorders.

“We really tailor our treatment approach to the family’s needs and preferences,” says Rubinstein. “In Cameron’s case it made the most sense to put him on formula at first and then introduce more foods over time.”

After several weeks of trying individual foods, Cameron has another endoscopy to see if there is any noticeable damage to his body. If no damage is seen, the food is added to Cameron’s “safe” list. It’s a short a list at the moment (rice and bananas have passed, pork and potatoes have failed), but Kim and his care team are hopeful that the list will grow as Cameron does.

“The plan going forward for Cameron, and really for all our patients on formula, is to introduce foods slowly, eventually building a sizeable list of safe foods,” Rubinstein says. “I think Cameron will be able to eat most things in time, and as long as he avoids his established trigger foods, he can have a fully balanced diet and enjoy eating like everyone else.”

Kim shares that optimism, but after watching Cameron go through a few failed trials, she has no delusions that it will happen overnight. Still, after each setback Kim reminds Cameron (and herself) that though the journey may be seem long, they’ll see the light at the end of the food trial tunnel some day.

“Unfortunately there’s no fast forward to get you through failed trials, or the symptoms and tears that come with them,” she says. “He’s a tough kid, so we take it one step at a time and celebrate the victories when we have them. We recently discovered a new recipe for one of Cameron’s safe foods and he can’t wait to share it with his care team. Moments like those really give us hope.”

Researchers in Sweden recently published a small study showing that children whose moms and dads placed the children’s pacifiers in their own mouths before giving it to the child—sharing some of their oral bacteria—were less likely to develop allergies like eczema and asthma later in life.

The study’s smaller size suggests that more research is needed before a link between pacifier “sharing” and reduced allergy risk can be proven, but the findings do add to a growing body of research that suggests bringing up children in a hyper-clean environment may not be the healthiest way to raise them.

“Western culture is becoming an increasingly sterile environment, but that might not be ideal for young children as their immune systems develop,” says John Lee, MD, director of Boston Children’s Hospital’s Food Allergy Clinic. “Their bodies need to learn what to attack and what to ignore. But if they’re exposed to too few, or the wrong kinds of germs, it can hinder development, sometimes confusing the immune system into attacking nonthreatening entities like pollen or food, which is what causes allergies.”

For the study, researchers followed around 180 babies and their parents. They interviewed parents about their pacifier-cleaning practices (whether  they used spit, tap or boiling water) and then checked the children’s allergy sensitivities at 18 and 36 months.

Nearly half of the parents studied said they occasionally sucked their children’s pacifiers clean, and those children had a significantly reduced risk of eczema, as well as a reduced risk of asthma, compared with children whose parents did not use their mouths to clean pacifiers. Blood tests also showed that children  whose parents cleaned their pacifiers with spit had lower levels of a specific type of a particular immune cell that is usually linked to allergies.

Analyses of the study participants’ saliva suggest that the children who occasionally used a pre-sucked pacifier had different microbes in their mouths. Microbes are the billions and billions of bacteria that live inside all people and affect many aspects of our health, like producing enzymes needed for digestion or anti-inflammatory agents used by our immune system.

According to the study, this direct parent-to-child microbial interaction could promote a healthier development of the child’s immune system by establishing a natural diversity of bacteria that is supposed to be present in the body.

The study also references data showing that from birth, children’s microbial exposure is linked to allergy development. (Babies delivered vaginally are exposed to different microbes than those delivered through Caesarean section—the latter are more likely to develop hay fever, asthma and food allergies.)

While all this information about bacteria exposure supports the idea that a parent cleaning a pacifier with his or her mouth might be strengthening the child’s microbial makeup and immune system, there is still much work to be done before that’s proven definitively.

“This study was too small to draw any conclusive facts about allergy and the sharing of microbes,” says Lee. “But I joke with families that a little dirt may be good for their kids, and this study certainly wouldn’t contradict that.”

Since the study’s publication, some dentists have noted that parents sharing oral bacteria with kids might lead to cavities. But Man Wai Ng, DDS, MPH, dentist in chief at Boston Children’s says it’s doubtful that occasional pacifier sharing would be overly damaging to young teeth.

“The reality is that saliva transfer is almost completely unavoidable, especially when babies get hugged and kissed a lot,” she says. “Since oral bacteria is just a part of life, parents should focus on what they can do: good brushing with a tiny smear of fluoride toothpaste, limiting exposures to sugary foods and drinks and visiting a dentist by age 1.”

Boston Children’s Hospital’s Allergy and Immunology Program is a leading center for the evaluation and treatment of children with allergies. To learn more about how we treat children of all ages with allergies, visit our website.

I remember the first time I saw my son’s name on his gravestone. I felt like I’d been punched in the stomach.

This was the name we had chosen for a baby, a name we expected to say as we called him to dinner, cheered him at soccer games or yelled at him for breaking curfew. We expected to see it on Christmas cards, report cards or a wedding invitation. We did not expect to see it on a gravestone.

Our names are so important, so precious to us. Every parent has a story of how they chose their child’s name; from the moment they are born, the name becomes part of them—it becomes them.

I think that’s why, if we lose our child, the name has such power over us.

Every year, Boston Children’s holds a memorial service for our patients who have died. It’s called “A Time to Remember,” and it’s really lovely: there are prayers, poems, speeches and songs. And then the name of each child who has died is said out loud as a flower is laid in a basket. Some of the names are said by family members, some are read by doctors as hospital staff lays flowers in the basket. But each name is said out loud.

It’s overwhelming. And beautiful.

This year, I asked a family if I could say their daughter’s name. They aren’t going to be there. Yes, said the father, you can. So I will say her name and remember her smile, a smile that won everyone’s heart.

That’s the thing: names are full of memories. We say a name and we remember the child learning to say it, we remember calling it across a playground, singing it in a song, writing it on forms, seeing it scrawled across a card. We hear a name and we are filled with stories, with moments that made us happy, angry, frustrated, sad, bewildered, humbled, awed. We hear a name and the images and smells and sounds come rushing in.

When a child dies, we don’t say the name much anymore. Which is understandable—they aren’t there to call to, and it can be painful. But that’s why events like the memorial service are so crucial: we need to say those names, and hear them.

And we need to say them and hear them together. Because that’s how we remember together. That’s how we honor these lives and all they gave us. That’s how we let each other know that the connections between us matter, and that we will never forget.

To my colleagues: please come. Hear the names. See the families. It makes a difference—for them, and for you.

A Time to Remember will be held on May22, at the Joseph B. Martin Conference Center at Harvard Medical School, 77 Avenue Louis Pasteur. The doors open at 6 p.m., with the service from 6:30 to 7:30 p.m., and reception immediately following. All are welcome.

Laura on the track

It’s a common belief among female runners: The lighter you are, the faster you are. It’s also believed that menstrual irregularities, or loss of periods, are a healthy part of competitive training. Neither is true.

That’s precisely what Laura Duff, a senior at Colby College and an avid runner, wishes she knew when she was in high school.

It was during the summer before Laura’s senior year of high school that she became more aware of how she looked. “I don’t know what switched,” she says, “I just became very aware, and started to restrict my eating and be more controlling.”

“I wish I could tell my high school self that worrying about your body isn’t worth it”

While part of her diet was intentional, another part was simply due to the structure of high school. Long days of classes and cross-country practice with little scheduled time for snacks and lunch made it hard to focus on getting enough calories. Soon, her weight started to drop.

The more she ran, the less she weighed, and when she finally fell down to 98 pounds, she stopped getting her period. “At first it was great, because who wants periods?” she says. “But when my doctor said my bone density was at stake, that’s when I got really scared.”

When female athletes lose their periods, it’s a sign of deficiency in the body that can result in decreased bone density. This interrelationship of calorie intake, menstrual cycles and bone health is commonly called the female athlete triad, and if a girl goes long enough without treating it, she could be at risk for serious reproductive and bone health issues as soon as high school or college.

“When my doctor said my bone density was at stake, that’s when I got really scared.”

Laura’s DXA scan (dual-energy x-ray absorptiometry) showed that her bone density was lower than it should be, putting her at a dangerous risk for stress fractures and even early osteoporosis. She gained a little weight per her doctor’s suggestion, and her periods came back intermittently.

When she entered Colby College as a freshman, her goal to run all three seasons of every year came to a halt when she suffered various hip and leg injuries. “I was the second-highest scoring freshman and on a national qualifying relay team, and then I lost my season,” she says.

At this point, she turned to Boston Children’ Hospital’s Female Athlete Program, where Kathryn Ackerman, MD, MPH, looked more deeply at her bone density. “My hips were getting the healthiest impact from my running, so they were fine, but my spine and wrists were low in density,” she says. Ackerman deemed her a classic case of the female athlete triad and recommended that she gain even more weight.

“At first it seemed frustrating, because I had already gained 10 pounds. But having a doctor who understands more than just bone density and periods, and who really knows what it’s like to be in the athletic community was huge,” says Laura. “She knew what was going on in my mind and in my body, and I trusted her.”

“Ironically, I felt my best when I was heaviest, and that’s also when I started beating my personal records.”

Laura knew better than to gain weight by loading up on junk food and instead focused on eating when she was hungry, adding healthy snacks throughout the day and lifting weights to gain more muscle. When she reached a healthy 122 pounds, she started having regular menstrual cycles.

“Ironically, I felt my best when I was heaviest, and that’s also when I started beating my personal records. It was so empowering for me to realize that the healthier I was, the faster I could run.”

Laura today

“I wish I could tell my high school self that worrying about your body isn’t worth it,” she says. “I wish I knew that what I was doing would impact my college running career, and that I would lose three seasons to bone-related injuries. I’ve come a long way after treatment, but who knows how much more I could have improved, had I not had to recover from so much?”

Now, as a senior in college, Laura looks back at her running career with pride and nostalgia. She has beat her own personal records, recovered from multiple bone and muscle injuries and has brought her body to the healthiest place it’s ever been. A double major in women’s health and biology neuroscience, and a leader in feminist and activist groups on campus, Laura is on a fast track to bettering the lives of other women around the world.

After all, she’s already done so for herself.

To make an appointment with a sports medicine expert at Boston Children’s Hospital Female Athlete Program, call 617-355-3501. Visit bchil.org/femaleathlete to download our helpful guides on health issues for female athletes.

Want to interact with more world-renowned sports medicine experts and Olympians, and learn how to stay as healthy as possible while competing? Register for the Female Athlete Conference: Strategies for Optimal Health and Performance today.

Being a mom means being a master of many skills. To succeed, you need to be a good listener, a quality teacher and, in some cases, you’ll need the speed of an Olympic athlete with the reflexes of a cat just to keep up with the kids.

And when the little ones get sick, the moms I know can transform into both nurse and doctor in an instant, tending to their children with compassion and care that rivals that of any medical professional.

No one understands this more than the patient families of Boston Children’s Hospital. In honor of Mother’s Day, I spent some time with a few of our patients and their mothers and asked the children what they’ll be celebrating this Sunday:

 “I love my mom with all my heart. She makes me chicken noodle soup when I don’t feel good and takes me shopping when I do!” –Victoria, 6

“This Mother’s Day I’m thankful for all my mom does for me, like cooking my favorite foods like chicken and rice. I also like planting with her.” –Axel, 12

 “My mom is such a great supporter of me. When I need her, she has my back and I’m lucky to have her.” –Justin, 14

“My mom was very nice when I was in the hospital. She made sure I got good food to eat and she read me my favorite book, ‘The Monster and the Kid.’” -Christian, 6

“I love my mommy, and I love it when she makes me broccoli to eat!” –Sophia, 4

“My mom is really helpful when it comes to supporting me and helping me with all my homework. Thanks Mom!” –Shalandra, 12

 “I am going to give my mom a big smooch on Mother’s Day!” –Aiden, 4  

Happy Mother’s Day to all our mom readers out there–you deserve it!