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Pediatrics

Cardiovascular Medicine, Patient Care, Pediatrics, Stanford News

A nurse puts heart into her work at Adult Congenital Heart Program

A nurse puts heart into her work at Adult Congenital Heart Program

heart_sillman_560A few decades ago, if a child was diagnosed a serious heart defect it was essentially a death sentence, but thanks to recent advances in neonatal heart surgery, most patients now live well into adulthood. And at least one of them has gone on to care for other people with congenital heart defects.

Christy Sillman, RN, is the nurse coordinator for Stanford’s Adult Congenital Heart Program and is profiled in the most recent issue of Inside Stanford Medicine. Although most people who were treated for heart defects as children don’t require continued surgical interventions as adults, doctors now know that they have other challenges that require ongoing care. Sillman went through this firsthand. After being told as a teenager that she was “cured” and going a decade without care, she learned she was suffering from cardiomyopathy, a deterioration of the heart muscle. From the article:

“At that point, my frustration with the medical care of people with congenital heart defects was elevated,” Sillman recalled. “I wouldn’t have been in such bad shape had I gotten the right care earlier. This motivated me to get more involved.”

That involvement was huge. Sillman talked with many people who shared similar stories, which inspired her to become an advocate for patients like herself. When a position was available with the program at Stanford in 2013, Sillman jumped at the chance and was hired.

“I don’t want any teenager to go through what I went through,” Sillman said. “Being told you’re cured and finding out that’s not really true? That should never happen.”

Sillman’s personal experiences are not unusual for a congenital cardiac patient of her generation, but it influenced her professional choices and now, she says, she enjoys bringing “a patient’s perspective” to her work.

Previously: Patient is “living to live instead of living to survive,” thanks to heart repair surgery
Photo by Norbert von der Groeben

Applied Biotechnology, Cancer, Genetics, Pediatrics, Research

Gene-sequencing rare tumors – and what it means for cancer research and treatment

Gene-sequencing rare tumors - and what it means for cancer research and treatment

Sequencing the genes of cancer patients’ tumors has the potential to surmount frustrating problems for those who work with rare cancers. Doctors who see patients with rare tumors are often unsure of which treatments will work. And, with few patients available, researchers are unable to assemble enough subjects to compare different therapies in gold-standard randomized clinical trials. But thanks to gene sequencing, that is about to change.

Though this specific research was not intended to shape the child’s treatment, similar sequencing could soon help doctors decide how to treat rare cancers in real time

That’s the take-away from a fascinating conversation about the implications of personalized tumor-gene sequencing that I had recently with two Stanford cancer experts. Cancer researcher Julien Sage, PhD, is the senior author of a recent scientific paper describing sequencing of a pediatric tumor that affects only one in every 5 million people. Alejandro Sweet-Cordero, MD, an oncologist who treats children with cancer at Lucile Packard Children’s Hospital Stanford, is leading one of Stanford’s several efforts to develop an efficient system for sequencing individual patients’ tumors.

In their paper, Sage’s team (led by medical student Lei Xu) analyzed the DNA and RNA of one child’s unusual liver tumor, a fibrolamellar hepatocellular carcinoma. The cause of this form of cancer has never been found. Curious about what genes drove the tumor’s proliferation, the scientists identified two genes that were likely culprits, both of which promoted cancer in petri dishes of cultured cells. One of the genes, encoding the enzyme protein kinase A, is a possible target for future cancer therapies.

Though this specific research was not intended to shape the child’s treatment, similar sequencing could soon help doctors decide how to treat rare cancers in real time. Sweet-Cordero is working to develop an efficient system for getting both the mechanics of sequencing and the labor-intensive analysis of the resulting genetic data completed in a few weeks, instead of the two to three months now required. “We’re trying to use this kind of technology  to really help patients,” Sage said. “If you’re dealing with a disease that may kill the patient very fast, you want to act on it as soon as possible.”

In addition to giving doctors clues about which chemotherapy drugs to try, gene sequencing gives them a new way to study tumors.

“What’s really important is that, instead of categorizing tumors based on how they look under a microscope, we’ll be able to categorize them based on their gene-mutation profile,” Sweet-Cordero said. Rather than setting up clinical trials based on a tumor’s histology, as doctors have done in the past, scientists will group patients for treatment trials on the basis of similar mutations in their tumors. “In my mind, as a clinical oncologist, this is the most transformative aspect of this technology,” he said. This is especially true for patients with rare tumors who might not otherwise benefit from clinical trials at all.

And for childhood cancers, knowing a tumor’s gene mutations could also help doctors avoid giving higher doses of toxic chemotherapy drugs than are truly needed.

“The way we’ve been successful in pediatric oncology is by being extremely aggressive,” Sweet-Cordero said. Oncologists take advantage of children’s natural resilience by giving extremely strong chemotherapy regimens, which beat back cancer but can also have damaging long-term side effects. “We end up over-treating significant groups of patients who could survive with less aggressive therapy,” Sweet-Cordero said. “If we can use genetic information to back off on really toxic therapies, we’ll have fewer pediatric cancer survivors with significant impairments.”

Meanwhile, Stanford cancer researchers are also tackling a related problem: the fact that not all malignant cells within a tumor may have the same genetic mutations, and they may not all be vulnerable to the same cancer drugs. Next month, the Stanford Cancer Institute is sponsoring a scientific symposium on the concept, known as tumor heterogeneity, and how it will affect the future of personalized cancer treatments.

Sage’s research was supported by the Lucile Packard Foundation for Children’s Health, Stanford NIH-NCATS-CTSA UL1 TR001085 and Child Health Research Institute of Stanford University. Sage and Sweet-Cordero are both members of the Stanford Cancer Institute, and the National Cancer Institute-designated Cancer Center.

Previously: Smoking gun or hit-and-run? How oncogenes make good cells go bad, Stanford researchers identify genes that cause disfiguring jaw tumor and Blood will tell: In Stanford study, tiny bits of circulating tumor DNA betray hidden cancers

Parenting, Pediatrics, Public Health, Research

Examining the effects of family time, screen time and parenting styles on child behavior

boardgameAs kids head back to school, many parents may be wondering what they can do to boost their children’s academic achievement. Findings recently published in the Journal of Family Psychology suggest that limiting screen time, increasing family time, and choosing parenting styles that rely on positive reinforcement are among the things that can help children perform better in school.

For The Learning Habit Study, the largest study of its kind, more than 21,000 parents across the country completed a 108-question survey about their children and family life. Among the findings: three family activities – eating regular dinners, attending religious services, and playing board games – were “significantly related to reduced screen time among children, higher GPA, and fewer emotional problems; ” parenting styles involving disciplining children when they misbehave or underperform were associated with a negative impact on children’s academic success, sleep and focus; and students’ sleep quality and grades start to decline after just 45 minutes of screen time.

From a recent WebMD story:

The good news for parents is they can easily make positive changes at home, says Robert Pressman, PhD. He’s the director of research at the New England Center for Pediatric Psychology and the study’s lead author.

Have regular family dinners, for example. They tend to happen at expected times and include conversation and information sharing. Parents can also shift their own habits and parenting styles in response to the study’s findings.

“These are all things that parents can do to make a difference,” Pressman says. “I think it’s going to change everything in terms of how we are going to interact with patients,” he adds. “We have hard data now that we didn’t have before. As a clinician, I know that I will have a greater impact.”

Previously: With school bells ringing, parents should ensure their children are doing enough sleeping, Study: Too much TV, computer could hurt kids’ mental health, Does TV watching, or prolonged sitting, contribute to child obesity rates? and Paper explores effects of electronic media on kids’ health
Photo by woodleywonderworks

Parenting, Pediatrics, Sleep

With school bells ringing, parents should ensure their children are doing enough sleeping

With school bells ringing, parents should ensure their children are doing enough sleeping

With so many schools starting today – or having recently started – it’s a good time for a reminder of the importance of sleep among children. In a recent blog post and the video above, Seattle Mama Doc (a.k.a. Wendy Sue Swanson, MD), offers guidance on how much sleep a child needs and offers five ways that parents can support good sleep:

    • Keep to an 8pm bedtime for young children. Move bedtime back slowly (move it by 30 minutes every 3-5 days) to prime your child for success and avoid battles!
    • 10pm bedtime for children age 12 & up is age-appropriate. More info here.
    • Habits: No screens 1-2 hours prior to bed, no caffeine after school, no food right before bed.
    • Exercise or move 30-60 minutes a day to help kids sleep easier
    • No sleeping with cell phones (create a docking station in the kitchen)
    • Don’t use OTC medications (cough & cold, for example) to knock your kids out and get them to sleep. Using medications that have a side effect of drowsiness can cause sleepiness to extend into daytime which can negatively affect school and sports performance.

Previously: Study shows poor sleep habits as a teenager can “stack the deck against you for obesity later in life”Stanford expert: Students shouldn’t sacrifice sleep, TV in a child’s bedroom? “No way,” says expert and Districts pushing back bells for the sake of teens’ sleep

Parenting, Pediatrics, Public Health

Study shows cavities have become the most common childhood disease

Study shows cavities have become the most common childhood disease

Kids mouthA Washington Post blog entry published earlier this week reports that cavities are the most common childhood chronic disease in the United States. Fifty-nine percent of kids between the ages of twelve and nineteen have at least one cavity, according to a recent Pediatrics paper, and the American Academy of Pediatrics in turn issued new recommendations advising parents to start brushing children’s teeth with fluoride as soon as the teeth appear. The study refers to cavities in young children as a “silent epidemic” that disproportionately affects poor, young and minority populations.

From the article:

“We’re still seeing a lot of cavities in very young children,” said Rebecca Slayton, a pediatric dentist and member of the executive committee of the academy’s section on oral health.  “Various national surveys show that we are making progress in some age groups, but in the younger age groups we are not.”

Some of the problem stems from poor and immigrant children lacking dental care, but even among parents with the resources to get their children to dentists, there is a lack of awareness that baby teeth need the same care as permanent ones. And infants, of course, can’t complain about tooth pain.

Whether it’s a lack awareness or lack of resources that is preventing parents from addressing tooth health, the article makes clear that regular dental hygiene for children is an important part of their overall health.

Jen Baxter is a freelance writer and photographer. After spending eight years working for Kaiser Permanente Health plan she took a self-imposed sabbatical to travel around South East Asia and become a blogger. She enjoys writing about nutrition, meditation, and mental health, and finding personal stories that inspire people to take responsibility for their own well-being. Her website and blog can be found at www.jenbaxter.com.

Previously: Side effects of childhood vaccines are extremely rare, new study finds, “Mountain Dew mouth” rots teeth, costs taxpayers 
Photo By: Emran Kassin

Applied Biotechnology, Parenting, Pediatrics, Research, Sleep, Stanford News, Technology

Biodesign fellows take on night terrors in children

Biodesign fellows take on night terrors in children

baby on bed

Standing in the Clark Center’s grand courtyard, gazing upward at scientists ascending an outdoor staircase and traversing the exterior corridors on the top two floors, one senses that big ideas take shape here. But how?

Prototyping, say Andy Rink, MD, and Varun Boriah, MS, who spent the last year as Biodesign fellows. Part of Stanford’s Bio-X community, the Biodesign Program trains researchers, clinicians and engineers to be medical-technology innovators during its year-long fellowship. Fellows learn the Biodesign Process, which could be likened to design thinking for health care. On teams of two or four, the fellows identify a substantial health-care need and generate ideas to solve it using medical-device innovation.

Though most Biodesign projects take root after fellows complete a “clinical immersion” shadowing health-care workers in a hospital to observe problems, Rink found his inspiration when visiting family and waking up to a 3-year-old relative’s screams from recurring night terrors. The problem was not so much that it affected the child – pediatricians may advise that children will likely outgrow the condition – but that it affected the parents, Rink saw.  The parent’s lost sleep and anxiety over their child’s well being had huge effects on their quality of life. (In some cases, these are so severe that Xanax and Valium may be prescribed to the children as a last-ditch effort.) What if a treatment could be found that involved no medication and no parental intervention, offering everyone a solid night’s sleep?

The physician and engineer are working with School of Medicine sleep researchers Christian Guilleminault, MD, professor of psychiatry and behavioral sciences, and Shannon Sullivan, MD, clinical assistant professor of psychiatry and behavioral sciences, on a clinical method to treat night terrors in children. In a first-floor room of the Clark Center, they’re protoyping an under-mattress device that senses how deeply a child is sleeping and is able to prevent the nightly episodes from occurring, creating a healthier sleep cycle for the children.  This relieves the parent’s anxiety, and helps the entire family sleep better.

Faculty and students from more than 40 departments across Stanford’s campus, including the schools of medicine, business, law, engineering and humanities and sciences, play a role in Biodesign, as do experts from outside the university. Fellows work closely with the Institute of Design at Stanford, attending – and then teaching – the school’s d.bootcamp. They also have access to the d.school’s facilities and consult regularly with their faculty. Some of the d.school’s methods – focusing on big problems, encouraging radical collaboration, prototyping early and user-testing before focusing on functionality – guide the trajectory of Biodesign projects.

Physicians who are Biodesign fellows often work outside their specialty, and engineers bring a mix of academic and industry experience to the design table. While faculty mentors may simply provide advice to fellows, Guilleminault and Sullivan have become invested in the course of the research as lead investigators on the study. For their involvement, they were both honored with the Biodesign Specialty Team Mentorship Award.

Fellow Boriah noted that medical-device innovation is moving from products like catheters to systems such as health IT, mobile health and software. A former CEO and co-founder of a wearable patient blood-diagnostics device, he said the Biodesign program has provided valuable “access to clinical reality.” Rink, a surgical resident at Northwestern University, said that as a fellow, he’s been “exposed to a side you don’t see in a hospital.”

The researchers are currently recruiting participants ages 2-12 for their study. Rink and Boriah are also working with the Stanford-supported StartX to see their project into the next stage of development.

Previously: Sleep, baby, sleep: Infants’ sleep difficulties could signal future problemsStudying pediatric sleep disorders an “integral part” of the future of sleep medicine and At Med School 101, teens learn that it’s “so cool to be a doctor” 
Photo by MissMayoi

Medicine and Literature, Orthopedics, Patient Care, Pediatrics, Stanford News

From post-WWII Russia To 7-year-old Giana Brown, a limb-lengthening method evolves

From post-WWII Russia To 7-year-old Giana Brown, a limb-lengthening method evolves

young patientGiana Brown is one tough little girl. When she was 7 years old, an orthopedic surgeon, Jeffrey Young, MD, from Lucile Packard Children’s Hospital Stanford, placed a brace called a Taylor Spatial Frame on her lower left leg that would help lengthen it about three inches to match her right leg. To accomplish this, the brace would require adjustments of about one millimeter a day for more than six months.

Her parents could have made those adjustments, but Giana insisted on doing it herself. She used a little wrench to turn the knobs that would lengthen the struts on the brace according to a computer-generated, color-coded prescription sheet.

Sculpting Bones,” the story of Giana’s rare bone disorder, her surgery and her recovery, is featured in this summer’s edition of Stanford Medicine magazine. An animated graphic illustrates in detail how the brace and bone biology work together to lengthen limbs. The story focuses not only the remarkable method of cutting a bone and slowly lengthening the gap to allow it to grow — called “distraction osteogensis” — but also on the unusual history of the “external fixator” device that makes this growth possible.

The device originated in a remote region of Siberia, Russia, nearly 70 years ago, where a young doctor, Gavriil Ilizarov, MD, cared for a patient population that included soldiers returning from the front lines of World War II with a vast array of bone injuries. Ilizarov discovered his method of distraction osteogenesis by accident, and a revolutionary method of bone lengthening was born.

Several decades later, orthopedic surgeon Charles Taylor, MD, and his brother, engineer Harold Taylor, modernized the device, changing the angle of the struts for more flexibility, and creating a computer program that generated prescriptions, “accurate to within a millionth of an inch and a ten-thousandth of a degree,” for adjusting the struts daily.

Although Giana’s dad, Greg, accurately describes the device as “draconian-looking,” her surgeon, Young, hails it as an ideal tool for healing his pediatric patients. “I really like how the technology allows me to basically sculpt the bone,” he says. “It’s the perfect blend of engineering and art.”

For Giana Brown, the accuracy, simplicity, and artistry of the device has paid off: She’s back to running and playing with her friends the way a healthy, happy kid should. Read her story – and her tips for making life a little easier in the frame -  here.

Previously: Stanford Medicine magazine opens up the world of surgery
Photo of Giana Brown by Max Aguilera-Hellweg

Cancer, Parenting, Pediatrics, Public Health, Research

Study shows number of American teens using sunscreen is declining

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Despite an increase in cases of melanoma, the most dangerous type of skin cancer, growing percentage of high school students get a failing grade when it comes to using sunscreen. HealthDay reports:

The number of U.S. teens using sunscreen dropped nearly 12 percent in the last decade, a new report shows.

During that same time period, the number of teens using indoor tanning beds barely decreased. Both indoor tanning and failure to use sunscreen increase the risk of skin cancers, including deadly melanomas, the researchers noted.

“Unfortunately, we found a decrease in the overall percentage of teens who reported wearing sunscreen, from 67.7 percent in 2001 to 56.1 percent in 2011,” said lead researcher Corey Basch, an associate professor in the department of public health at William Paterson University in Wayne, N.J.

“Using sun-protective behaviors like applying sunscreen and avoiding intentional exposure to tanning devices will be key [to lowering cancer risk],” she added.

Use of indoor tanning devices by white girls decreased only slightly, from 37 percent in 2009 to 29 percent in 2011, she said.

Study authors say more research is need to understand why teens aren’t following national guidelines regarding sun protection.

Previously: Melanoma rates exceed rates of lung cancer in some areas, Beat the heat – and protect your skin from the sun, Working to protect athletes from sun dangers and Stanford study: Young men more likely to succumb to melanoma
Photo by Alex Liivet

From August 11-25, Scope will be on a limited publishing schedule. During that time, you may also notice a delay in comment moderation. We’ll return to our regular schedule on August 25.

Obesity, Parenting, Pediatrics, Research, Sleep

Study shows poor sleep habits as a teenager can “stack the deck against you for obesity later in life”

Study shows poor sleep habits as a teenager can "stack the deck against you for obesity later in life"

11386276_c148dfd9bd_zNew research examining the effect of sleeplessness on weight gain in teenagers over time offers strong evidence that inadequate sleep may increase the risk of obesity.

In the study, researchers at Columbia University and the University of North Carolina pored over health information from the the National Longitudinal Study of Adolescent Health on more than 10,000 Americans ages 16 and 21. In addition, details about individuals’ height, weight and sleep habits were collected during home visits in 1995 and 2001.  According to a release, results showed:

Nearly one-fifth of the 16-year-olds reported getting less than six hours of sleep. This group was 20 percent more likely to be obese by age 21, compared to their peers who got more than eight hours of sleep. While lack of physical activity and time spent watching television contributed to obesity, they did not account for the relationship between sleeplessness and obesity.

“Lack of sleep in your teenage years can stack the deck against you for obesity later in life,” says [Columbia researcher Shakira Suglia, ScD]. “Once you’re an obese adult, it is much harder to lose weight and keep it off. And the longer you are obese, the greater your risk for health problems like heart disease, diabetes, and cancer.”

“The message for parents is to make sure their teenagers get more than eight hours a night,” adds Suglia. “A good night’s sleep does more than help them stay alert in school. It helps them grow into healthy adults.”

Previously: Want teens to eat healthy? Make sure they get a good night’s sleepProlonged fatigue and mood disorders among teensMore evidence linking sleep deprivation and obesityStudy shows link between lack of sleep and obesity in teen boys and Study shows lack of sleep during adolescence may have “lasting consequences” on the brain
Photo by Adrian Sampson

From August 11-25, Scope will be on a limited publishing schedule. During that time, you may also notice a delay in comment moderation. We’ll return to our regular schedule on August 25.

Neuroscience, Pediatrics, Research, Stanford News

Kids’ brains reorganize as they learn new things, study shows

Kids' brains reorganize as they learn new things, study shows

arithmeticWhy do some children pick up on arithmetic much more easily than others? New Stanford findings from the first longitudinal brain-scanning study of kids solving math problems are shedding light on this question. The work gives interesting insight into how a child’s brain builds itself while also absorbing, storing and using new information. It turns out that the hippocampus, already known as a memory center, plays a key role in this construction project.

Published this week in Nature Neuroscience, the research focuses on what’s happening in the brain as children shift from counting on their fingers to the more efficient strategy of pulling math facts directly from memory. To conduct the study, the research team collected two sets of magnetic resonance imaging scans, about a year apart, on a group of grade-schoolers. From our press release:

“We wanted to understand how children acquire new knowledge, and determine why some children learn to retrieve facts from memory better than others,” said Vinod Menon, PhD, the Rachel L. and Walter F. Nichols, MD, professor of psychiatry and behavioral sciences at Stanford and the senior author of the study. “This work provides insight into the dynamic changes that occur over the course of cognitive development in each child.”

The study also adds to prior research into the differences between how children’s and adults’ brains solve math problems. Children use certain brain regions, including the hippocampus and the prefrontal cortex, very differently from adults when the two groups are solving the same types of math problems, the study showed.

“It was surprising to us that the hippocampal and prefrontal contributions to memory-based problem-solving during childhood don’t look anything like what we would have expected for the adult brain,” said postdoctoral scholar Shaozheng Qin, PhD, who is the paper’s lead author.

The study found that as children aged from an average of 8.2 to 9.4 years, they counted less and pulled facts from memory more when solving math problems. Over the same period, the hippocampus became more active and forged new connections with other parts of the brain, particularly several regions of the neocortex. But comparison groups of adolescents and adults were found on brain scans not to be making much use of the hippocampus when solving math problems. In other words, Menon told me, “The hippocampus is providing a scaffold for learning and consolidating facts into long-term memory in children.” And the stronger the scaffold of connections in an individual child, the more readily he or she pulled math facts from memory.

Now that the scientists have a baseline understanding of how this brain-building process normally works, they hope to run similar brain-scanning tests on children with math learning disabilities, with the aim of understanding what goes awry in the brains of children who really struggle with math.

Previously: Unusual brain organization found in autistic kids who best peers at math, Peering into the brain to predict kids’ responses to math tutoring and New research tracks “math anxiety” in the brain
Photo by Yannis

From August 11-25, Scope will be on a limited publishing schedule. During that time, you may also notice a delay in comment moderation. We’ll return to our regular schedule on August 25.

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