Pediatrics

Patients at the country’s top children’s hospitals are increasingly likely to be chronically ill. This ongoing trend in pediatric medicine might seem counterintuitive at first – isn’t medical science supposed to be improving children’s health?

The trend is, in fact, a byproduct of medical advances: Fewer kids now end up hospitalized with infectious diseases. At the same time, doctors have made big strides in saving the lives of babies and children who once would have died of conditions such as congenital deformities, cancer and genetic diseases. Those children have chronic medical needs.

And this raises the question: What is it like to be a child who lives with a chronic illness?

I recently got to see one inspiring answer to this question when I interviewed Santa Clara, Calif. 14-year-old Rahman Humphries and his mom, Natasha. Rahm, as he likes to be called, has been treated at Lucile Packard Children’s Hospital since infancy for the genetic disease sickle cell anemia. But that’s only a small part of who he is. Rahm is also a ninth grade student, a water polo player and a snowboarder. He has climbed part of Mt. Fuji and scuba dived off the California coast. And, as of February, he is an Eagle Scout.

My recently published story describes the relationship that Rahm and Natasha have forged with their Packard Children’s caregivers, pediatric hematologist Michael Jeng, MD, and nurse practitioner Judie Lea, as they have learned to balance the challenges of managing sickle cell anemia with Rahm’s desire to be a regular kid:

Rahm has the most severe form of sickle cell anemia, known as Hemoglobin SS, a genetic disease of the red blood cells. In this condition, physical stressors such as intense exercise can trigger painful “sickle cell crises” that carry a risk of serious complications, including strokes and pneumonia. After years of helping Rahm and Natasha manage these risks, Jeng and Lea knew that the Eagle Scout award represented an even bigger achievement for Rahm than for most other boys.

“Dr. Jeng has become almost a family member,” Natasha said. “He knows Rahm has limits, but he also knows it’s important to me that Rahm doesn’t see sickle cell anemia as a handicap. Dr. Jeng tries to enable him as much as possible.”

Previously: Rules for living with a chronic illness
Photo courtesy of the family

Years from having a baby, I still worry altogether too frequently about the difficulty of giving up coffee during and after pregnancy. That’s why I sat alert upon reading this NPR Shots post delivering the news that turning to caffeine during the sleep-deprived first few months of motherhood might not contribute to infants’ nighttime waking, as has been widely believed.

Research from Brazil’s Universidade Federal de Pelotas followed 885 babies, all born in 2004 and in the same city, to investigate whether a mother’s caffeine consumption during pregnancy and breastfeeding led to frequent nocturnal awakening in her 3-month-old infant. From Shots:

Crying and colic at 3 months old, as well as frequent night waking at 12 months, were not affected by a mom’s caffeine intake.

…

It’s not clear why the infants’ sleep wasn’t affected. The babies might have developed a tolerance to caffeine while in the womb, [Marlos Rodrigues Domingues, PhD, co-author of the study] says. But other studies have found no caffeine metabolites in the urine of babies whose mothers drink coffee, suggesting that the babies don’t absorb caffeine the way older children and adults do.

In their study, which was published in Pediatrics, the researchers conclude, “Caffeine consumption during pregnancy and by nursing mothers seems not to have consequences on sleep of infants at the age of 3 months.” But as Shots’ Nancy Shutes points out:

That leaves the question of what helps get a baby to sleep in the first place.

Previously: Working moms get less sleep than dads and Being “emotionally available” may be key to getting your baby to sleep
Photo by: Qole Pejorian

The world of pediatric audiology is getting smaller. Thanks to innovations in telemedicine, access to experts in this medical specialty can now be achieved from remote areas.

A recent article on HealthyCal.org describes one family’s experience getting a diagnosis for their infant daughter, who experienced hearing difficulties from birth. From a general hospital in rural Northern California, one medical team communicated by videoconference with another at UC Davis Medical Center in Sacramento. The specialist at Davis performed an examination and even gave directions for a test, which was administered by the on-site technicians and read as a digital image back in Sacramento.

Reaching specialists to diagnose problems early on can improve health outcomes and save money in the long term. From HealthyCal:

The cost of missing the window for early intervention are huge, [James Marcin, MD, professor of pediatric critical care medicine and director of the UC Davis Health System Pediatric Telemedicine Program] said, both for hearing impaired children and their families as well as to taxpayers.

“For each kids that you are able to intervene in early, you will save 1.4 million in lost wages and health effects like anxiety, depression, diabetes and heart disease. Our goal is to miss no one,” Marcin said.

Previously: Can telemedicine work for dermatology patients? and Monitoring patient wellness from a distance
Via @KQEDscience
Photo by Tom & Katrien

Over the past decade, the number of youth athletes treated in hospital emergency rooms for concussions has doubled. The increased awareness about sports-related concussions has spurred researchers, including a group at Stanford, to explore what types of actions cause concussions and to work on improving methods for diagnosing head injuries.

One possibility for safeguarding children against concussions could be high-tech helmets that monitor head impacts, suggest researchers in a commentary published in Clinical Journal of Sports Medicine. DiscoveryNews reports today:

In football, at least 50 percent of head injuries are not reported, the authors note. But helmets equipped with sensors can alert medical personnel on the sidelines that an athlete has taken a certain number of hits associated with the risk of concussion.

…

The authors, who have an affiliation with the Head Impact Telemetry System, a wireless apparatus that outfits players’ helmets with padded sensors, say that the type of technology is not important. And athletes in sports who don’t require helmets could use similar technology built into mouthguards or other headgear. It’s not much different, the authors say, than limiting the number of pitches thrown in baseball and Little League, a practice that has been around for years.

Researchers say such helmets wouldn’t be a diagnostic tool but would instead serve as an alert system to identify which players need further evaluation from an on- or off-site medical professional.

Previously: Study suggests teens are more vulnerable to effects of sport-related concussions, Should parents worry about their kids playing football?, A conversation with Daniel Garza about football and concussions, High-tech mouthpieces used to advance medical understanding of concussions in football and When can athletes return to play? Stanford researchers provide guidance
Photo by Nick Weiler

A UC Los Angeles study published last December found that relative to its competitors, Lucile Packard Children’s Hospital does a reasonably good job of providing healthy choices in its cafeteria. Still, hospital leaders saw room for improvement.

So when water damaged the ground floor of the hospital four months ago, and a major overhaul of the cafeteria was required, officials used the renovations as an opportunity to transform the cafeteria’s nutritional offerings to promote healthier eating habits. Thomas Robinson, MD, director of the Packard Children’s Center for Healthy Weight, commented on the changes in an Inside Stanford Medicine story published today:

For years, members of our medical and nursing staff have been approaching me and saying, ‘We need to improve the food in the cafeteria, because we’re advocating for everyone to do that in their own homes and in the community… It wasn’t very long ago that people smoked in hospitals. This is very much the same thing.

The article goes on to describe the menu changes:

Upon its reopening on Jan. 17, the cafeteria’s menu had been revamped to ensure that all items meet the hospital’s new food and beverage policy, which addresses food characteristics such as fat, sugar and salt content and portion sizes. It also calls for serving whole-grain breads and pasta, low-fat dairy and meat products, vegetarian options and a variety of seasonal and locally grown fruits and vegetables.

In addition, sugar-sweetened beverages, deep-fried foods and bacon cheeseburgers have been eliminated.

Previously: Children’s hospitals need to promote healthy eating, UCLA study says
Photo by USDAgov

I’m a big fan of a piece of pending California legislation, AB 2109, that is designed to increase vaccination rates among children enrolling in school and daycare. Right now, instead of showing vaccination records upon enrollment, parents who have chosen not to vaccinate are permitted to sign an exemption form stating they have made their choice because of their personal beliefs. A post on About.com’s Pediatrics blog explains how the new law, if passed, will change that:

Instead of simply signing a personal belief vaccine exemption form on their own, parents will be required to have a written statement signed by a health practitioner that says the parent was given information about the benefits and risks of immunizations and the risks of certain vaccine-preventable diseases.

… “With the increase in outbreaks of common vaccine preventable diseases in California and nationally, now more than ever, parents need to get the right information about vaccines before exempting their children from immunization,” said Jeff Goad, Pharm D., President of the California Immunization Coalition. “This legislation simply mandates that parents receive accurate information about the risks and benefits of vaccines and the diseases they prevent before making decisions about not vaccinating their children.”

I feel strongly about this legislation in part because I write about the kids that this law is designed to protect: infants who are too young to receive vaccinations and children whose medical conditions make vaccination unsafe. Kids whose lives have been saved by organ transplantation, for instance, can’t be vaccinated because of the immune-suppressing drugs they must take to keep their transplants healthy. These children rely on the “herd immunity” conferred by high vaccination rates to protect them from potentially deadly infectious diseases such as measles and whooping cough. The new law would ensure that parents will learn about their role in building “herd immunity” – the importance of vaccinating to protect not just their own kids but also others – before they choose to forgo vaccines.

That leads to the second reason I feel strongly about this legislation: I’m a mom. Interviewing families whose children are dangerously ill has given me a real appreciation for how fortunate I am to have a healthy child. I think it’s part of my civic duty to make sure my toddler won’t spread germs that endanger the lives of the most fragile members of our community.

If you live in California, here’s a source for information about how to support the pending law.

Previously: “Herd immunity” causes dramatic drop in infant chicken pox, Washington state starts school year with tougher requirements for vaccine exemptions, How to save $83 billion? Vaccinate and Unvaccinated children may pose a public health risk
Photo by Jill A. Brown

I remember with great clarity my least-favorite part of third grade: the “Mad Minute of Math.” These timed math quizzes, pale green sheets of paper covered in columns of ditto-machined sums, filled me with panic. In that panic, how could I possibly remember the answer to 5+7?

So I was particularly excited to write about a new study from a Stanford team on the neurological basis of math anxiety. This study in second- and third-graders is the first in any age group to directly compare brain activity in individuals with low and high levels of math anxiety. As the press release I wrote on the subject explains:

“The same part of the brain that responds to fearful situations, such as seeing a spider or snake, also shows a heightened response in children with high math anxiety,” said Vinod Menon, PhD, the Stanford professor of psychiatry and behavioral sciences who led the research.

… In the children with high math anxiety, the scans showed heightened activity in the amygdala, the brain’s main fear center, and also in a section of the hippocampus, a brain structure that helps form new memories. They also had decreased activity in several brain regions associated with working memory and numerical reasoning. Interestingly, analysis of brain connections showed that, in children with high math anxiety, the increased activity in the fear center was driving the reduced function in numerical information-processing regions of the brain. Further, children with high math anxiety also showed greater connections between the amygdala and emotion-regulating regions of the brain.

A better understanding of how math anxiety affects the brain could help researchers develop more-effective methods for helping kids overcome the problem. Such intervention is important, Menon said, because studies by others have shown that children with math anxiety often go on to avoid math classes and end up with a substandard math education.

As for me, my anxiety about math gradually lessened after third grade. Although I did experience a few moments of graphing-calculator-induced panic in my college calculus courses,  nothing ever again felt quite as bad as having to face those pale green “Mad Minute” sheets.

A shortage of chemotherapy drugs continues to plague patients in the U.S. The recent, widespread scarcity of medications continues to grow in severity, Healthland reports today in the first of a two-part series investigating the issue:

The shortfalls aren’t limited to cancer drugs either–antibiotics, anesthetics, vaccines and even medications to treat ADHD are getting scarcer. According to the Food and Drug Administration (FDA), demand outstripped the supply of 178 drugs in 2010. The University of Utah Drug Information Service, which works with the American Society of Health System Pharmacists (ASHP) to track shortfalls, says the number was actually closer to 211. Last year, the ASHP and Utah group say the number of drugs in short supply reached a record high of 267.

Stanford’s Michael Link, MD, the Lydia J. Lee Professor in Pediatric Cancer, provides this perspective in the article:

“There’s little question that it has never been like this, not just with cancer drugs, but with drug shortages in general,” says [Link], president of the American Society of Clinical Oncology. “We have had shortages before, but they have been intermittent, and never anything as extensive both in terms of the breadth of drugs affected and the depths of shortages and how long they lasted.”

Examining the economics of drug supply and the sometimes-competing interests in the supply chain, the Healthland piece offers a hard look at a complex problem in an urgent stage.

Previously: Childhood leukemia patient on methotrexate shortage and A look at the dramatic improvement in pediatric cancer survival rates
Photo by Phil and Pam

Parents’ role in autism treatment is the subject of a feature story I wrote for the upcoming issue of Stanford Medicine magazine. My story focuses on efforts at Lucile Packard Children’s Hospital to teach parents to deliver scientifically-supported autism treatments to their kids, and also to show them techniques for objectively evaluating the autism therapies their children receive.

As I reported the story, I quickly realized that raising a child with autism requires a much more intense investment of time and resources than raising a typically-developing kid. I wondered what sort of toll that takes on other elements of parents’ lives. A new study, out today in Pediatrics, answers one part of that question: the effects on a family’s earning power.

Mothers’ employment and earning power are especially affected when a child has autism, reports a story covering the new study on MedPage Today:

On average, compared with mothers of children with no health limitations, mothers of children with an ASD were 6% less likely to work, worked 7 fewer hours, and earned 56% ($14,755) less, according to Zuleyha Cidav, PhD, of the University of Pennsylvania in Philadelphia, and colleagues.

…

“Given the substantial healthcare expenses associated with ASD, the economic impact of having lower income in addition to these expenses is substantial,” they wrote. “It is essential to design universal healthcare and workplace policies that recognize the full impact of autism.”

Last year, a Centers for Disease Control and Prevention report (.pdf) showed that only a small percentage of U.S. hospitals provided the necessary support for breastfeeding moms, and its authors argued there was a clear need for better in-hospital support for new moms. Jane Morton, MD, whole-heartedly agrees.

Morton, a clinical professor of pediatrics at Stanford, recently presented a Grand Rounds talk titled “Is Pumping Out of Hand? Game-Changing Research About Breastmilk Expression” at Lucile Packard Children’s Hospital. During the presentation, she discussed her work teaching moms how to breastfeed successfully and underscored the need for health-care workers to better educate women about breastfeeding techniques.

Below Morton discusses her research findings related to increasing breastmilk production, nursing premature infants and electric pump vs. hand pumping.

What motivated you to begin researching the effectiveness of breastfeeding techniques?

Years ago, when I first began private practice, I had one after another motivated mothers end up with problems. There were no teachers or mavens to learn from. So it became a personal quest – one with many rewards.

Why have hand expression techniques been an under-utilized skill among new mothers?

In many medical arenas, there’s been a drift away from bedside hands-on evaluation towards reliance on technical devices. When a $1,500 pump is pushed into the room, a new mother would assume this is state-of-the- art technology. Often, the most available care provider is inexperienced and uncomfortable teaching techniques that involve touching the breast. Odd, since the same staff member may feel comfortable with obstetrical manipulations.

Your research (subscription required) shows there are significant differences in milk production between electric pumping and hand expression. What factors contribute to increased milk production when mothers use hand expression techniques?

When a baby removes milk, the infant uses a combination of suction and the stripping action of the jaw and tongue. Suction alone is less effective at removing more viscous milk such as colostrum, or fat-rich breast milk.  In comparison, the massaging action used with hands-on pumping and hand expression, the two manual techniques demonstrated in our research, is much more effective.

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There’s a thought-provoking perspective today on the Well blog about how adopting certain pediatric practices could improve the quality of care for adult patients. In the piece, Perri Klass, MD, examines the different approaches to treating adults and children and concludes that when it comes to feeling scared, vulnerable or anxious about medical procedures age doesn’t matter.

Grown-ups aren’t necessarily physically stronger or more emotionally tougher than their pint-size counterparts when it comes to being sick or hurt, argues Klass, and translating pediatric practices for adult medicine could make painful experiences more comfortable for patients. She writes:

The adage “children are not just small adults” is so basic in pediatrics that you can search medical journals and find it applied to treatments for facial fractures, liver failure and cardiac arrhythmias, for example. We have learned over time to fine-tune medical care to the differently wired physiologies of children, and to their emotional development.

But when it comes to certain aspects of medical treatment, especially hospitalization, perhaps it’s time to acknowledge that adults are really just big children. Illness, pain and the shadows of disability and death — all hospital familiars — make all of us vulnerable, at any age, and reassurance and comfort are welcome.

Photo by Hubert K

As of January 1, minors in the Golden State are banned from indoor UV tanning. California is the first in the nation to restrict this artificial bronzing process for those 18-years-old and under, and 18 states are now considering a similar ban.

A USA Today story reports on the issue, with writer Tracy Lowe explaining that most states already require parental consent for teens who tan to use indoor UV facilities. But a complete ban for all minors is stronger, and something that many feel is important:

“As parents, we don’t provide permission slips to our children to smoke cigarettes or drink liquor,” [Maryland State Sen. Jamie] Raskin, a Democrat, said. “As a matter of public health, we should take electronic tanning devices off the table for children.”

As it turns out, tanning is also an important issue to Stanford experts. Susan Swetter, MD, professor of dermatology, and colleagues at the Stanford Cancer Institute, for example, have been vocal in their belief that tanning bed usage and other recreational tanning likely has contributed to a dramatic increase in melanoma cases among California girls and women. And melanoma is the deadliest type of skin cancer.

Previously: State Senator Ted Lieu weighs in on tanning-bed legislation, New law: No more tanning beds for California teens, A push to keep minors away from tanning beds, Intense, rapid sun tanning may increase skin cancer risk
Photo by joelogon

Reducing the amount of time families spend fetching water can improve the health of young children in sub-Saharan Africa, according a recent Stanford study.

Over a third of the world’s population doesn’t have potable water piped into the home, but in sub-Saharan Africa that figure jumps to 84 percent. To better understand the relationship between the time devoted to fetching water and health outcomes in the region, researchers at Stanford examined data from 26 African countries where it is estimated that some 40 billion hours of labor each year are spent hauling water. The responsibility of fetching water is often borne by women and children. And, as explained in a School of Engineering release:

The study found that cutting the walking time to a water source by just 15 minutes can reduce under-five mortality of children by 11 percent, and slash the prevalence of nutrition-depleting diarrhea by 41 percent.

…

The authors proposed several reasons that might explain the correlation. Longer fetching times could mean that people bring less water home and, therefore, ration more, leaving little water for hand-washing and other hygienic activities that decrease the spread of disease. Conversely, mothers who spend significant time fetching water may have fewer free hours to care for their children in ways that promote health, and may lose opportunities to earn income that might pay for more nutritious diets and improved health care.

The work appears in the Environmental Science and Technology.

Photo by Amy Pickering

Given my history of writing about – and my passion for - this issue, I couldn’t let more time go by without flagging a recent Time Healthland piece on the health benefits of breastfeeding. In the article Bonnie Rochman highlights a “quietly worded statement” in which the American Academy of Pediatrics earlier this week called breastfeeding a “public health issue and not only a lifestyle choice.” And she explains why that’s such a big deal:

Much of the statement on infant nutrition doesn’t differ radically from previous versions. But the recognition on behalf of the group’s 60,000 pediatricians that breast is best for mom, baby and the nation’s general well-being is creating buzz in the breast-feeding community.

…

At Best for Babes, which promotes support for breast-feeding, co-founder Danielle Rigg praised the AAP for equating breast-feeding with public health. “In framing it that way, it becomes all of our responsibility — not just moms — to provide both the infrastructure and the social support to see to it that as many moms and babies as possible can do it,” she says. “If we can do it for breast cancer, we can do it for breastfeeding.”

Dr. Richard Schanler, chair of the AAP’s section on breast-feeding and director of neonatology at Cohen Children’s Medical Center in Long Island, is even more candid. “It’s not should I or shouldn’t I?” says Schanler. “Of course you should. It’s important for the health of your baby. And it’s important for your health too.”

Previously: More breastfeeding support needed in hospitals, Victory for nursing moms: IRS now says breastfeeding is a medical expense, Surgeon general calls for more breastfeeding support and Breastfeeding called a “secret weapon to save billions of dollars”
Photo by myllissa

Online therapy could be an effective new tool for treating teens with chronic fatigue syndrome (CFS), according to findings published today in the Lancet.

In the study (subscription required), Dutch researchers assigned 135 teens, who had CFS symptoms for nearly two years, to receive Internet-based behavioral therapy, individual and group behavioral therapy or exercise-based therapy. The web-based treatment, which was developed by the research team, included a 21-module educational component and regular e-mail interactions between patients and specially-trained therapists. Treatment progression was monitored by regular e-mail contacts between therapists, patients, and their parents. Online treatment programs lasted an average of 26 weeks.

Shots reports that study results showed:

After 6 months, 85 percent of the teenagers using Internet-delivered therapy group said they no longer had severe fatigue, compared to 27 percent getting therapy in person. Three-quarters of the Internet group had returned to school, compared to 16 percent of the in-person therapy group.

Researchers speculated that the Internet-based behavioral therapy may have been more effective because it reduced barriers to delivering one-on-one care, allowed patients to work on assignments at their own pace and made therapists more accessible. While CFS is somewhat rare among teens, researchers say the same method could be used in treating children suffering from fatigue during cancer treatment or some forms of headaches.

Previously: Deciphering the puzzle of chronic fatigue syndrome, Unraveling the mystery of chronic fatigue syndrome and Free self-management program offered to people with chronic illness