One evening last May, I came home to the note below.

Natasha's treatise, page 1

My daughter Natasha, 10 years old and in 4^thgrade at the time, wanted a cell phone bad. She’d been asking and asking and essentially being ignored, so she decided to put her argument in writing (with, I found out later, the support of my husband). She went through all the reasons she should have one (you can’t tell from the picture, but it was on really big paper), figuring it would be irrefutable.

It didn’t work. We said no, you have to wait until middle school like your older siblings did. She really didn’t need one—she never strayed far from home, we didn’t need it for school pick-up planning (she always knows if she should walk home), and we were pretty good at estimating when we should pick her up from swim practice (there are phones at the YMCA to call us if there is a problem). More importantly, we were concerned about the downsides of cell phones. We didn’t want her distracted (it was the image of Tash texting as she walked in the street that changed my husband’s mind), we didn’t want to deal with the possibilities of things like sexting or bullying via cell phone, and the World Health Organization had just come out with a statement saying that cell phone usage could possibly increase the risk of cancer (they put it in the same group as coffee, but whatever, risk is risk).

Natasha's treatise, page 2

And, it turned out, the real reason she wanted one was that her friends had them. It wasn’t about needing one, it was about wanting to be cool. She kept up the campaign for a long time. Finally, after several months, she gave up (I have to say, although it was a relief not to be fighting with her, part of me that felt sad that we’d squelched her feistiness.)

Then something happened: I started wishing Tash had a cell phone.

Mostly, it was the darn swim practice thing. Who knows, maybe it was on purpose, but she got more social with the girls on the team and sometimes (unpredictably, of course) took literally forever showering and getting dressed. Because we don’t want her waiting outside on the street long, especially in winter, we err on the side of getting there early (leaving dinner on the stove or work undone)—and sometimes wait for a frustratingly long time.

But it was more than that. Tash started venturing out into the world more—going on bike rides alone, walking further to friends’ houses, going with friends to the park. Although we have all sorts of rules about routes and contacting us, I couldn’t help wishing there was a way for us to reach her—or her us—immediately if necessary.

I’m not alone in wanting my preteen kid to have a phone. According to a 2010 Mediamark Research Intelligence study, from 2005-2009 the percentage of 10-11-year-olds with a cell phone went from 20% to 36%, an 80% increase. Given the exponential nature of this rise, we are probably at around 50% now.

Cell phones are simply becoming part of life for our youth. In a 2009 Pew Internet survey, none of the 17-year-olds surveyed had cell phones when they were 11—but 16% of 14-year-olds and 20% of 13-year-olds did. I get that evolution. When my oldest two got their phones 7 years ago at 13 and 12, I had no idea how it was going to affect our lives. Now I have a better idea. Yes, there are dangers and downsides. We’ve learned to manage most of those with safety and usage rules (no texting while walking on the street and phone off at bedtime, for example.) We talk about bullying and other ways phone usage can go bad.

But we’ve also found that there are real upsides. The convenience and safety stuff is huge, but the ability to connect is really wonderful too. The other day my son called mid-afternoon to say he’d just walked within 5 feet of Secretary of Defense Robert Gates on his college campus (way cooler than any movie star as far as Zack is concerned). We send pictures or videos of what we are doing back and forth. We wish each other good luck. We are always within reach of each other—and as a parent, I love that.

So as Natasha’s 11^th birthday approached, I talked to my husband. Turns out he’d been thinking the same thing. Here’s the video (the hugs caused some technical difficulties):

For more information about kids and cell phones, visit the website of the Center on Media and Child Health

Daivd Ludwig, MD, MPH

Every month the Journal of the American Medical Association (JAMA) publishes an article called Clinical Crossroads, where a patient case is presented and medical professionals are invited to share their thoughts on how they might treat that person. A few weeks later the case is presented again, this time with commentary from an expert who specializes in the medical condition profiled in the article.

The most recent Clinical Crossroads was written by David Ludwig, MD, PhD, director of the New Balance Foundation Obesity Prevention Center Boston Children’s Hospital. Ludwig’s case focuses around Ms K, a 14 year-old girl struggling to lose weight.

Unlike typical medical case studies that focus on diagnosis and treatment of acute illness, Clinical Crossroads often takes into account the ethical, emotional and economic issues related to the patient’s health and treatment. All three of these elements figure heavily in Ms K’s story, making it ideal for the Clinical Crossroads treatment.

But as Ludwig himself would tell you, overcoming childhood obesity isn’t just the job of pediatricians and their patients; parents play a vital role in helping children achieve and maintain a healthy weight and lifestyle too. With that in mind, we are presenting Dr. Ludwig’s Clinical Crossroads piece to you on Thriving and asking for your input as parents.

Given the following situation, what are some ways Ms K and her parents could work as a team to help her live healthier? If you were her mother or father, what would you do to support her efforts?

Ms K is an obese 14-year-old girl who is struggling with weight loss. She lives in the greater metropolitan Boston area. Ms K began to gain weight at age 8 years. Over the past 7 years, her weight has gone up by 20 to 30 lb annually … She reports trying various weight loss programs but either she did not follow through or they did not work. She has never lost more than 5 lb with any focused effort.

On a typical day, Ms K skips breakfast, so her school lunch is her first meal of the day. She eats whatever is served there, often something “greasy,” with a small salad and chocolate milk. When she comes home from school, she begins to snack on “good” junk food. Over the course of the afternoon, she might have several of the following: baked chips, a cereal bar or 2, 2 or more “100-calorie packs,” a glass of (1%) milk, crackers, or pasta with cheese. She eats dinner with her parents, which is often fried chicken, pasta with cheese, or a hamburger. There are rarely vegetables on the plate. After dinner, she will routinely eat more, ingesting 1 to 3 snacks while working on her computer. She does not routinely eat dessert at dinner and does not drink sugar-sweetened beverages. She does not watch television regularly. She used to ride a horse several times a week but has not done so in several years. Her only regular activity is walking home from school, about mile daily.

Ms K was told by her pediatrician that she needed to lose weight or she might develop diabetes. She has experienced harassment at school and online related to her obesity. There has also been significant tension between Ms K and her parents—especially her mother—about her eating habits and progressive weight gain.

   Ms K’s mother was interviewed for the piece, and said the following:

“Probably the biggest challenge that my husband and I have had is backing off. I constantly watch her, correct her, and stop her from doing things. I am almost obsessive about what she eats, what she doesn’t eat. My husband and I went to a counselor locally, and he was the one to tell us we need to back off because it is making things worse. That’s been the biggest challenge. I think I feel like I am the food police sometimes.”

Please share your ideas with us on how families can work together to improve eating habits by commenting on the blog, leaving a message on our Facebook wall or connecting with us @ThrivingKids on Twitter.

To speak with a member of the New Balance Foundation Obesity Prevention Center Boston Children’s Hospital please visit their website.

The cover of today’s Boston Globe features the beaming face of Alannah Shevenell, a 9 year-old who will be heading home to Maine this morning after a three-month stay at Children’s Hospital Boston.

For just under 100 days Alannah and her grandmother have been staying at Children’s while she received treatment for a rare and aggressive cancer that was compromising several of her internal organs. When all other treatments had failed, Heung Bae Kim, MD, director of Children’s Pediatric Transplant Center (PTC), suggested a multivisceral transplant that would remove Alannah’s tumor and replace the six organs that had been damaged by its presence.

Under Kim’s guidance surgeons from Children’s PTC performed the 14-hour procedure. Once Alannah’s tumor was successfully removed doctors took the donor organs, which came from one donor and were kept together as a single unit, and transplanted them into the young girl. Now, a few months later, Alannah is ready to head home, making Children’s PTC the first ever center in New England to successfully transplant six organs in a single procedure— a very impressive number in the field of multivisceral transplantation.

Watch this video from the Boston Globe on Alannah’s treatment:

Heung Bae Kim, MD

 

Any time organ transplants are needed there are drawbacks, like time spent waiting for an organ to become available, potential complications during surgery and the risk that the body will reject the new organ at some point. Needless to say, a procedure that involves not one, but six organs, is even more risky. But as proved by Alannah, six-organ multivisceral transplants are possible.

Of course, this achievement would not have been possible without the collaborative efforts of the members of the Children’s PTC. Established in 2006, the center brings together experts who specialize in all forms of transplantation, including heart, lung, liver, intestine, kidney and stem cell transplant. This multidisciplinary approach enables Children’s to use all of its resources in order to provide the highest quality of care in the most complex situations.

This may not be a great confession to make as a pediatrician, but when it comes to sleep and kids, I am a total softie.

Our kids slept in our bed. We slept in theirs (which was very cramped in the toddler bed, and didn’t do great things to the frame)—or lay next to them as they drifted off to sleep. We sat on the floor, telling stories and singing lullabies and slowly edging out of the bedroom as their breathing got deep and regular. We went in again and again to retrieve the stuffed animal from under the bed or to investigate the scary noise or possible spider. When they woke in the middle of the night, we held them until they went back to sleep—sometimes night after night.

Our children have always had a reasonable bedtime (even if we ignore it sometimes), we’ve made sure their sleep is safe, and there has never been (or will be) a TV in a bedroom. And now that they are older, everyone sleeps just fine. But when they were little, it never really mattered to us whether they slept independently, or all night. We broke all sorts of “sleep rules” on a regular basis.

Not what a pediatrician is supposed to say.

I am not going to argue for a moment that uninterrupted sleep isn’t a good thing. It’s a great thing. I’ve probably whittled months if not years off my life, and lost a few brain cells, from all the interrupted sleep I had between 1991, when my first child was born, and 2009 when my sixth (at 4) stopped breastfeeding and moved definitively into his own bed.

But for us, at the time, uninterrupted sleep wasn’t so important. Breastfeeding was important, and it’s really hard to do that for any length of time without some co-sleeping. Just being close to the kids was important—our third child was born disabled and died in infancy, and, well, for us there was nothing better than falling asleep with a cheek on our child’s head (D. H. Lawrence had it right when he wrote, “Sleep is most perfect when it is shared with a beloved”.) For us, holding everybody closer was part of moving forward.

We were also lazy. It was just easier to get up and climb in bed with someone, or bring them into our bed, than work at getting them to go back to sleep by themselves. We knew they would eventually, and they did. We were fine with “eventually” being kindergarten and not infancy. That’s it, in a nutshell: We were fine. We were getting enough sleep overall, we weren’t persistently grouchy (I won’t deny that we had some grouchy days after bad nights), it worked for our needs and our life.

Personally, I think that as a culture we are a bit too hung up on getting our kids scheduled and independent practically from the time they are born. But I’m not out to convince anyone of that as a pediatrician. When I talk to parents about their kids and sleep, aside from finding out if what they are doing is safe and healthy, what I most want to know is whether what they are doing works for them. If it does, we move on to the next topic. If it doesn’t, I’ll work with them to find a solution. That solution might be getting their kids to sleep independently and through the night—but it might be something else.

For what it’s worth, I am not a softie on everything. I’m really strict about eating vegetables, limiting TV time, and homework. I will not abide lies, everyone has to exercise, and no matter how angry my kids might get with each other, I insist on basic standards of kindness. We all find our way as parents, and decide what’s most important to us.

Honestly, there aren’t all that many absolutes when it comes to raising kids. You must love them, really love them so they know it. You must do everything you can to keep them safe and healthy. You must keep their future in mind, because at some point they will move on and you want them to have a good and choice-filled life. But there are literally millions of ways to do these things—billions, really. As many ways as there are families.

One bit of advice, if you are going to curl up in bed with your kid: Don’t buy a toddler bed.

To learn about how Children’s Hospital Boston helps children with sleep problems, visit the website of the Center for Pediatric Sleep Disorders.  And for more information on safe sleep, read “A Parent’s Guide to Safe Sleep” from the American Academy of Pediatrics.

Genetic testing may help sarcoma patients and their famlies know their risk of other cancers later in life

If your child is diagnosed with a sarcoma—a tumor in connective tissue like muscles or bones—it’s natural to become totally focused on his immediate recovery. But what if beating sarcoma wasn’t the only time your child might face cancer?

Data shows that there is a link between sarcomas and Li-Fraumeni syndrome, a rare condition that raises a person’s risk of developing one or more cancers to as high as 85 percent. Cancers typically diagnosed in patients with Li-Fraumeni syndrome include breast cancer, sarcomas, brain tumors, acute leukemia and adrenal cortical carcinoma. Recently, the list has been expanded to include colon cancer and stomach cancer.

Li-Fraumeni syndrome may be rare, but the connection has led genetic specialists at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC) to recommend that all child sarcoma patients be offered genetic counseling for Li-Fraumeni syndrome.

“Identification of an inherited gene alteration can sometimes help guide current treatment decisions,” says Carly Grant, MS, CGC, a genetic counselor of the Pediatric Cancer Risk Program at DF/CHCC, one of the first programs in the country that provides multidisciplinary consultative care to patients and their families whose condition or family history suggests an increased risk of cancer. “It may also help with early detection and cancer prevention in the future.”

Lisa Diller is studying new screening options for Li-Fraumeni syndrome.

There are benefits and drawbacks  to genetic testing for the mutation linked to Li-Fraumeni syndrome, but doing so allows genetic counselors to provide families with the information they need to make informed decisions about their child’s care.

For example, since people with Li-Fraumeni syndrome are especially sensitive to radiation, which has been linked to the development of future cancers in some patients, knowing whether or not a child carries a mutation may help the care team weigh the benefits and risks of radiation treatment.

And since the mutation linked to Li-Fraumeni syndrome is typically inherited, there may be other family members at risk who would also have the option of being tested. Children who test positive can then be more carefully monitored by their physicians, while adults may be advised to have screening at an earlier age and more frequently for certain cancers.

In the coming months, Dana-Farber scientists led by Lisa Diller, MD, will be launching a new study testing the effectiveness of rapid full-body MRI scans for children and adults with Li-Fraumeni syndrome. The goal is to learn how to find and treat cancers effectively in people with Li-Fraumeni syndrome.

Diller and other Dana-Farber/Children’s Hospital Cancer Center scientists are also working to launch a national study on other screening options.

“Genetic testing may provide important information about cancer risks and medical management options that can be invaluable to a patient and their team of oncologists and specialists,” Grant says.

If you’re interested in discussing the option of genetic counseling for your child, please contact the Pediatric Cancer Risk Program at 617-632-4298 or email CancerRisk@childrens.harvard.edu.

A more in-depth version of this blog originally ran on Insight, the official blog of Dana-Farber Cancer Institute. See that version here.

Michael Rich, MD, MPH

Michael Rich, MD, MPH, is Children’s Hospital Boston’s media expert and director of Children’s Center on Media and Child Health. Take a look at his blog archive or follow him on Twitter @CMCH_Boston

Q: I have an son who’s 11 and a daughter who’s 9½, and for many years, they have sat close to the TV when watching. I have asked them to sit farther away, and they do move back maybe a foot…but they always go back to viewing the show close up, even if the screen is a 40” color flat screen. Any studies that show why? Any concerns? My wife and I sit 8 to 10 feet from the TV.
-Up Close and Personal, in Rochester Hills, MI

A: Dear Up Close,

Concern about sitting close to TV screens, like concern about reading in low light, is founded more on what our parents told us when we were little than on research. The worries about sitting close dates from the (not so long ago) time when TVs were actually “tubes”—cathode ray tubes, that is—and people were uncertain about how the cathode radiation emitted might affect a viewer’s eyes. Today’s TVs flatscreens only emit the light you see, which removes that concern. And there’s no evidence that sitting close to either kind of screen hurts your eyes.

That said, the fact that your children sit so close to the TV may be a sign that they are near-sighted and that this distance is where they best resolve the pixels of color, light, and darkness into a coherent image. Bring them in for an eye exam to see whether they need glasses.

If their eyes are fine, then they probably sit close because they like having the screen fill their peripheral vision. That shouldn’t cause any problems. Just make sure that they aren’t staring at screens all the time—that can cause eye strain and, of course, will take time away from all of the other activities they need to accomplish in a day to be happy and healthy.

Enjoy your media and use them wisely,
The Mediatrician®

Claire McCarthy MD

The other evening, as I was trying to get him into the shower, my 6-year-old son Liam explained to me the meaning of the phrase “hits the spot.”

“There is a spot,” he said, pointing to his chest. “It’s small when you are little,” he explained, putting his thumb and index finger close together, “but it gets bigger when you grow up. When you eat something, it passes by that spot and you feel good.” He wriggled out of his pants. “Sometimes it makes you feel dizzy—but in a good way, like how I feel when I drink hot cocoa.” He demonstrated by spinning around, narrowly avoiding the bathroom scale and towel rack. “It makes you just want to lie down.”

“So that’s what ‘hits the spot’ means,” he said, as he got his socks off and climbed into the shower.

Liam has explanations for everything, from moonlight to sleep to how airplanes fly. Sometimes they are pretty close to accurate; Liam asks lots of questions and listens to the answers and is developing a remarkably good grasp of a remarkable number of concepts. But sometimes they are purely fantastical. And yet, the logical, matter-of-fact way he explains them to us (patiently, too, as if we are beings of lesser intelligence) makes them seem somehow plausible and possible.

Around Liam, possible stretches.

As we finished the shower, making sure all the shampoo was out of his spiky hair and that he’d soaped and rinsed everywhere, Liam looked down at himself and said, “I feel smaller.”

“Like you shrunk in the shower?” I responded. “Well,” I said (not thinking about the ramifications), “sometimes things do shrink in hot water.”

His eyes got big as I helped him out of the shower and wrapped him in a towel. “I really do feel smaller, “ he said, dropping the towel and getting on the scale. “I think it was a bigger number before.”

I have no idea what Liam weighs so couldn’t dispute with the necessary certainty. “You’re not smaller, sweetie,” I reassured him. But Liam was not to be convinced. He put on his pajamas. “These were smaller before, “ he said.

A memory came to me suddenly, of an afternoon when I was nine years old. I was walking home from elementary school with my best friend Katie Gorman. It was a really foggy day, and the crest of the hill on Kemswick Road disappeared into the mist.

“Maybe,” I said to Katie, “when we get to the top of the hill we will walk into a different world.”

Katie stared up at the hill for a while. “Maybe we will,” she said finally.

We walked silently and slowly, our eyes on the top of the hill. As we walked, my heart quickened. It was silly, it wasn’t really possible, but—what if it was? There was something about the heavy mist that made the day and the road feel different from anything before. I thought of Narnia and the other wondrous places I’d read about in books and how in those books ordinary people got to have extraordinary adventures. Why not me? I imagined what it might be like—and felt excited and just a little bit hopeful that maybe the world could indeed have some magic.

As we got to the top of the hill, it became clear that the only thing on the other side was the downslope of Kemswick Road. Of course there was nothing else. We didn’t talk as we walked down the hill.

I’ve never forgotten that feeling as I walked up the hill. It was wonderful, that sense that the impossible might not be impossible after all—that possible could stretch.

We think of it as a silly childhood thing, stretching possible. We laugh at it in our children and take it as a sign of maturity when they stop doing it. But living it every day with Liam has got me thinking that it’s not silly at all—and that we shouldn’t stop doing it. Narnia may not have been at the top of Kemswick Road, but if you always let your thinking be limited by what people have told you is possible, you will never discover anything new. In fact, it’s that ability—or maybe just willingness—to imagine other explanations and solutions that has led to every great discovery.

I knelt down in front of Liam and tugged at the bottom of his pajama shirt.

“Maybe you’re right,” I said.

Sandra Fenwick, president and COO

I’ve worked at Children’s Hospital Boston for more than a decade, and I’m still inspired every day by the hope and strength I see on the faces of our patients and their families. As Children’s navigates a challenging and evolving health care landscape, I draw on that inspiration and determination, especially when many in our industry seem to imply that cost is the only measure of a hospital’s worth.

At Children’s, our worth—our value—is so much more than just dollars and cents. It means being treated by pediatric experts—doctors, nurses and support staff—who understand that children are not small adults and their care needs to reflect that fact. It’s a commitment to care and innovation that produces programs like our Community Asthma Initiative, which helps children with asthma have fewer attacks so they miss less school and their parents miss fewer days of work.

And it’s about a commitment to constantly improving the quality of the care we deliver. To that end, I am pleased to announce that we have signed an innovative new contract with the state’s largest health insurance provider, Blue Cross Blue Shield of Massachusetts (BCBSMA).

This agreement, known as an Alternative Quality Contract (AQC), calls for us to reach quality targets based on national pediatric quality benchmarks—the first such contract in the country—and keeps the contract value well below medical inflation

The AQC has specific quality measures in the areas of primary care (prevention and treatment), effectiveness of treatment for patients with certain conditions or needs (cystic fibrosis, dialysis or general surgery needs) and safety (central line infections). In addition, we have agreed to accept a 0 percent rate increase in the first year and an average 1.5 percent annual increase over the three years of the contract.

Since 2009, Children’s has taken more than $125 million out of the health care system to benefit insurers, employers and consumers

This contract is aligned with our efforts over the last three years to improve quality  while slowing the rising cost of care delivery. Since 2009, Children’s has taken more than $125 million out of the health care system to benefit insurers, employers and consumers. We have reduced insurers’ rates and prices, become more efficient and have innovated new ways to deliver care that improve quality while lowering costs. In addition, we have moved care to lower-cost settings within the hospital and to our less expensive suburban satellites and community hospital partners, and have improved care integration between primary care physicians and hospital subspecialists.

As far as I’m concerned, the greatest indication of Children’s value is the trust of the parents who place more than 170,000 children in our care each year. Whether they come to us from around the block, or the other side of the world, Children’s takes great pride in knowing that every patient who comes through our doors will receive the same level of world-class care that has made Children’s a leader in pediatrics for more than 140 years.

For more on the Blue Cross Blue Shield deal, read Sandra Fenwick’s interview with WBUR.