Published by
Stanford Medicine

Category

Pediatrics

Ethics, Genetics, Medicine and Society, Parenting, Pediatrics, Stanford News

Genome testing for children: What parents should consider

Genome testing for children: What parents should consider

Genome testing: Would you do it?

Okay, next question: Would you have your child’s whole genome tested?

In the recent issue of Stanford Medicine News, Louanne Hudgins, MD, chief of medical genetics and director of perinatal genetics at Lucile Packard Children’s Hospital Stanford, weighs in on the issue: “I strongly advise parents against whole-genome testing for their children unless performed in the context of a medical evaluation following formal counseling regarding its utility, limitations and possible unrelated findings,” she said.

In the piece, Hudgins comments on privacy and ethics considerations, and explains why what we partially know (for instance, if your child is found to have a gene predisposing him or her to a disease) can sometimes provide more cause for worry or false hope than helpful or conclusive information.

The whole piece (a short one) is worth a read.

Previously: Stanford patient on having her genome sequenced: “This is the right thing to do for our family”, Personal molecular profiling detects diseases earlier, Stanford geneticist discusses genomics and medicine in TEDMED talk and Medical practice, patents, and “custom children”: A look at the future of reproductive medicine

Health and Fitness, Nutrition, Obesity, Parenting, Pediatrics, Stanford News

Childhood obesity expert to parents: Reduce your child’s screen time

Childhood obesity expert to parents: Reduce your child's screen time

screen-tvTake a few minutes to read a brief and informative piece about the negative health effects of too much screen time for children and how you can set boundaries for your kids – or perhaps yourself. In a Stanford Medicine News Q&A, pediatrician Thomas Robinson, MD, MPH, director of the Center for Healthy Weight at Lucile Packard Children’s Hospital Stanford, explains how watching TV or playing video games contributes to inactivity, overeating and obesity. Robinson also speaks to the modern-day concern of restricting access to screen devices that can also be educational tools, such as the iPad.

From the Q&A:

What’s the relationship between excessive screen time and childhood obesity?

It’s a true cause-and-effect relationship. The more time kids spend with screens, the less time they are spending being active. The best evidence supports two primary mechanisms—that kids eat more while watching screens and that exposure to food advertising leads to an increased eating of high-sugar, high-fat and calorie-dense foods. Lots of research shows that kids—and adults—eat more when distracted by a screen. So one of the most important things a family can do is eliminate eating while watching TV and other screens.

Previously:  Talking to kids about junk food ads, This is your 4-year-old on cartoons, 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

Cancer, Clinical Trials, Pediatrics, Public Health, Research

Researchers call for broader age limits for cancer trials to increase participation of teenage patients

Researchers call for broader age limits for cancer trials to increase participation of teenage patients

Findings published today in the Lancet Oncology highlight the need to increase the flexibility of age limits for cancer trials so that more teenage patients have access to experimental treatments. “Right now too many of our young patients are needlessly falling through the gap between paediatric and adult cancer trials,” said Lorna Fern, PhD, who led the study and co-ordinates research for the Teenage and Young Adult Clinical Studies Group of the UK-based National Cancer Research Institute.

In the study (subscription required), researchers examined strategies to boost participation of teens and young adults diagnosed with cancer in clinical trials. The study involved 68,275 patients, aged 0-59 years, who were diagnosed with cancer within a five-year window. According to a release:

The study showed [trials designed with broader age limits] led to a 13 per cent rise in 15-19 year old cancer patients taking part in clinical trials between 2005 and 2010 (from 24 to 37 per cent), and a five per cent rise in 20-24 year olds (from 13 to 18 per cent). Children under 14 taking part in trials rose by six per cent (from 52 to 58 per cent).

This rise was due to the increase in availability and access to trials for young people, increased awareness from healthcare professionals, patients and the public about research and importantly the opening of trials with broader age limits which allow older teenagers and young adults to enter trials.

Fern added, “By encouraging doctors to take into account the full age range of patients affected by individual types of cancer, we’ve shown that it’s possible to design trials that include teenage cancer patients and, importantly, that better match the underlying biology of the disease and the people affected.”

Previously: High rates of incarceration among black men could be skewing study results, Stanford researchers examine disparities in use of quality cancer centers and NPR explores the need for improving diversity in clinical trials

Immunology, In the News, Infectious Disease, Parenting, Pediatrics, Public Health

Side effects of childhood vaccines are extremely rare, new study finds

Side effects of childhood vaccines are extremely rare, new study finds

Pneumococcus-vaccineAs you may have heard about elsewhere, a new paper published today on the safety of childhood vaccines provides reassurance for parents and pediatricians that side effects from vaccination are rare and mostly transient. The paper, a meta-analysis appearing in Pediatrics, updates a 2011 Institute of Medicine report on childhood vaccine safety. It analyzed the results of 67 safety studies of vaccines used in the United States for children aged 6 and younger.

“There are no surprises here; vaccines are being shown over and over again to be quite safe,” said Cornelia Dekker, MD, medical director of the vaccine program at Lucile Packard Children’s Hospital Stanford, who chatted with me about the study earlier today. “The safety record for our U.S.-licensed vaccines is excellent. There are a few vaccines for which they document that there are indeed adverse events, but the frequency is quite rare, and in almost all cases they are very easy to manage and self-limited.”

A Pediatrics commentary (.pdf) accompanying the new study puts the value of immunization in context:

Modeling of vaccine impact demonstrates that routine childhood immunizations in the 2009 US birth cohort would prevent ~42,000 deaths and 20 million cases of disease and save $13.5 billion in direct health care costs and $68.8 billion in societal costs.

The commentary goes on to contrast the risks of vaccines with the potential complications of vaccine-preventable diseases:

The adverse events identified by the authors were rare and in most cases would be expected to resolve completely after the adverse event. This contrasts starkly with the natural infections that vaccines are designed to prevent, which may reduce the quality of life through permanent morbidities, such as blindness, deafness, developmental delay, epilepsy, or paralysis and may also result in death.

The study found evidence against suspected links between vaccines and several acute and chronic diseases. For instance, the researchers found high-quality evidence that several different vaccines are not linked to childhood leukemia and that the measles, mumps and rubella (MMR) vaccine is not linked to autism. The DTaP vaccine is not linked to diabetes mellitus, and the Hepatitis B vaccine is not connected to multiple sclerosis, according to moderate-quality evidence.

The evidence does connect a few vaccines to side effects. For instance, the MMR, pneumococcal conjugate 13 and influenza vaccines are linked to small risks of febrile seizures, with the risk of such seizures increasing slightly if the PCV-13 and flu vaccines are given together.

“A febrile seizure can be quite alarming, but fortunately it does not have long-lasting consequences for child,” Dekker said, noting that the risk of such seizures from vaccines is around a dozen per 100,000 doses of vaccine administered.

The rotavirus vaccine is linked to risk of intussusception, an intestinal problem that can also occur with rotavirus infection itself. But the benefits of rotavirus vaccination “clearly outweigh the small additional risk,” Dekker said.

The study confirmed earlier research showing that some vaccines, including MMR and varicella, cause problems for immunocompromised children, such as kids who have HIV or who have received organ transplants. Since they can’t safely receive vaccines, this group of children relies on the herd immunity of their community to protect them.

“It’s not as if the parents of immunocompromised kids have a choice about whether to vaccinate,” Dekker told me. “They have to depend on others to keep immunization levels high, and that starts breaking down when more people hold back from having their healthy kids fully immunized.”

Dekker hopes the new findings will encourage more parents to have their healthy kids fully vaccinated.

Previously: Measles is disappearing from the Western hemisphere, Measles are on the rise; now’s the time to vaccinate, says infectious-disease expert and Tips for parents on back-to-school vaccinations
Photo by Gates Foundation

Cardiovascular Medicine, Genetics, Patient Care, Pediatrics, Research, Stanford News

When ten days = a lifetime: Rapid whole-genome sequencing helps critically ill newborn

When ten days = a lifetime: Rapid whole-genome sequencing helps critically ill newborn

8963661410_d59cc4c08f_z

It’s an ‘edge-of-your-seat’ story: The newborn’s heart had stopped multiple times in the hours since her birth. Her doctors at Lucile Packard Children’s Hospital Stanford had tried everything to help her, but her situation was dire.

The baby had an unusually severe form of an inherited cardiac condition called long QT syndrome. The syndrome, which is most often diagnosed in older children or adults, can be caused by a mutation in any of several genes; until the doctors knew exactly which genetic mutation was causing the condition they wouldn’t know what drug would be most likely to help. The stakes were high: by her second day of life she’d received an implantable defibrillator and several intravenous drug infusions.

As cardiologist Euan Ashley, MD, PhD, explained to me:

The team literally tried everything we could think of to help this child, including trying every drug that could possibly make a difference. It was a heroic effort by a very diverse group of professionals.

The clinicians and researchers, including pediatric cardiologist Scott Ceresnak, MD, who managed the baby’s clinical care, realized it was critically important to identify the baby’s disease-causing mutation to learn which drug would be best for her. To do so, they dropped everything else they were doing and sequenced her entire genome to pinpoint the culprit within just ten days – an unprecedented feat. Ashley, who directs Stanford’s new Clinical Genomics Service as well as its  Center for Inherited Cardiovascular Disease, and pediatric cardiology fellow James Priest, MD, recently published the case study in the journal Heart Rhythm.

This is the future of genetic testing and we hope, the future of medicine.

Using customized commercial software and tools developed at Stanford, the researchers were able to zero in on a mutation in a gene called KCNH2 known to be associated with long QT. They also found another, novel mutation in a gene involved in determining the structure of the heart during development.

As Priest explained in an e-mail to me:

Whether it is a CT scan, x-ray, or genetic test, we work hard to make a diagnosis as quickly as possible when there is a critically-ill baby under our care. Whole genome sequencing returned this diagnosis in days instead of weeks. We were able to turn the raw sequence data into a diagnosis in about 12 hours.

Continue Reading »

Global Health, In the News, Pediatrics, Public Safety, Sexual Health, Women's Health

Stanford research shows rape prevention program helps Kenyan girls “find the power to say no”

Stanford research shows rape prevention program helps Kenyan girls "find the power to say no"

The San Francisco Chronicle has a great story today about a collaborative project that is reducing rape and sexual assault of impoverished girls in Kenya.

The story highlights the combined efforts of activists Jake Sinclair, MD, and his wife, Lee Paiva Sinclair, who founded nonprofit No Means No Worldwide to provide empowerment training to Kenayn girls, and the Stanford team that has been analyzing the results of their efforts. As we’ve described before, this work is a great example of the academic chops of Stanford experts’ being combined with on-the-ground activism to make a difference for an urgent real-world problem.

As the article explains:

The girls and hundreds of others like them have participated in a rape-prevention workshop created by Jake Sinclair and Lee Paiva, a San Francisco doctor and his artist wife who have been working in Kenya for 14 years.

Their program is working, and that’s not just according to the dozen or so testimonials online, the couple said. Two studies out of Stanford – one published in April this year, one the year before – have found that girls who have gone through the couples’ classes experience fewer sexual assaults after the workshops.

More telling, perhaps: More than half of the girls report using some tool they learned from the classes to protect themselves, from kicking a man in the groin to yelling at someone to stop.

“It’s great to see the girls just find their voice, to find the power to say ‘no,’ ” Sinclair said. “It’s so enlightening. You can see it in their eyes, that something’s changed.”

Stanford research scholar Clea Sarnquist, DrPH, who has played an important role in the project, adds:

“A lot of these girls are using voice and verbal skills first,” Sarnquist said. “That’s one of the key things, is teaching the girls that they have the right to protect themselves – that they have domain over their own bodies, and they have the right to speak up for their own self interest.”

The whole story is definitely worth a read.

Previously: Empowerment training prevents rape of Kenyan girls and Self-defense training reduces rapes in Kenya

Pediatrics, Stanford News, Transplants

How mentorship shaped a Stanford surgeon’s 30 years of liver transplants

How mentorship shaped a Stanford surgeon's 30 years of liver transplants

Carlos Esquivel - OR_560

This year, pediatric liver transplant surgeon Carlos Esquivel, MD, PhD, is celebrating the 30th anniversary of his first liver transplant and his long career as a innovator of transplantation for tiny, fragile babies. When I was researching a story to mark the milestone, I wondered what led Esquivel to perform his very first transplant back in 1984.

As my story describes, a high-powered mentor shaped Esquivel’s career:

Near the end of his surgical residency at UC Davis, [Esquivel] realized that his planned career in vascular surgery would not challenge him enough. He sought a fellowship with the University of Pittsburgh’s Thomas Starzl, MD, PhD, who had performed the first successful human liver transplants a few years before and was refining the difficult, esoteric procedure. Soon, Starzl guided Esquivel through a transplant on a man with acute liver failure who had come to the hospital in a deep coma. The operation went well. Two days later, the patient awoke.

“Once I saw that — somebody who was at death’s doorstep waking up — it was unbelievable,” Esquivel said. “I never looked back.”

The background to that first surgery, which didn’t make it into my story, is quite interesting. When Esquivel arrived in Pittsburgh, Starzl’s team was conducting 300 liver transplants per year, sometimes several in a day. Esquivel was one of 40 fellows vying to learn the procedure. Surgeons operated with crowds of these apprentices peering over their shoulders.

Liver transplant was tricky. Because the liver performs many unique functions, including filtering toxins and secreting essential proteins into the blood, the patients were very ill.

“They’re some of the sickest patients in the hospital,” Esquivel told me. “When the liver doesn’t work, the blood doesn’t clot.” During transplant, patients could lose significant amounts of blood.

Esquivel was fortunate: As he described it, Starzl quickly took a liking to him. Many fellows were in Pittsburgh for a long time without being allowed to operate, but just three months after Esquivel arrived, Starzl said “Carlos, you are going to do your first liver transplant.”

Esquivel’s first-time jitters were mild until he learned that his patient was also a surgeon, a young surgical resident who had contracted acute hepatitis through a needle-stick injury. The man’s liver was failing fast. He came to the hospital on a respirator, in a deep coma. Despite Esquivel’s anxiety the procedure went smoothly – so well that, when the patient woke up, he was hungry.

“Even still hooked up to the respirator, he was asking what there was for breakfast,” Esquivel said, adding the comment I quoted above about his amazement at seeing the awakening of someone who had been at death’s doorstep. With Starzl’s guidance, Esquivel went on to tackle the toughest liver transplants with aplomb, eventually saving the lives of many babies and young children whom other surgeons turned away.

Continue Reading »

Clinical Trials, Nutrition, Parenting, Pediatrics, Research, Women's Health

Stanford study investigates how to prevent moms from passing on eating disorders

Stanford study investigates how to prevent moms from passing on eating disorders

veggie-stirfryResearchers have known for some time that women who have previously had eating disorders face a special set of challenges when they begin feeding their own children: They may unintentionally pass on problematic eating behaviors to their kids.

Now a Stanford research team is studying how to help these moms. They are recruiting families with a child between the ages of 1 and 5 whose mother had anorexia nervosa, bulimia nervosa or binge-eating disorder in the past. In the 16-week study, the researchers will work with both the mother and her partner to build healthy family interactions around food.

From our announcement about the study:

“The data on feeding practices of mothers who have had eating disorders are very worrying,” said Shiri Sadeh-Sharvit, PhD, a visiting scholar at Stanford who is leading the new study. “These mothers are good parents who want only the best for their children, but they struggle with eating-disorder thinking. It’s something that comes and blurs their parenting.”

Prior research has shown that mealtime conflict is more common in families in which the mother has had an eating disorder. These mothers may overfeed or underfeed their children, though underfeeding is more predominant. They also have more difficulty recognizing hunger and fullness cues in themselves and their children, which makes it harder for them to help their kids learn to respond to these sensations. Children whose mothers have had eating disorders are more likely than other kids to be dissatisfied with their bodies and engage in emotional eating, binge eating or restrictive eating.

Sadeh-Sharvit is collaborating with James Lock, MD, PhD, who has a long track record of demonstrating the effectiveness of eating-disorder treatments that involve the patient’s family in the treatment process.

Local families who are interested in participating in the research can contact Sadeh-Sharvit at (650) 497-4949 or shiri_sade@yahoo.com for more information. Stanford’s Eating Disorders Research Program also maintains an online list of all of their eating-disorder studies that are currently seeking participants.

Previously: Promoting healthy eating and a positive body image on college campuses, A growing consensus for revamping anorexia nervosa treatment and Story highlights need to change the way we view and diagnose eating disorders in men
Photo by Indiana Public Media

CDC, In the News, Pediatrics, Public Health

Teens these days: smoking less, but engaging in other risky behaviors

Teens these days: smoking less, but engaging in other risky behaviors

teen musicalMr. Camel, tear up those cigarettes. Statistics from the latest Youth Risk Behavior Surveillance System survey, released today by the U.S. Centers for Disease Control and Prevention, show that 2013 marked the lowest incidence (15.7 percent) of teen smoking reported since 1991.

In other news, texting while driving, drinking soda and having unprotected sex are among the behaviors the report notes are worthy of concern. From the report:

During the 30 days before the survey, 41.4% of high school students nationwide among the 64.7% who drove a car or other vehicle during the 30 days before the survey had texted or e-mailed while driving, 34.9% had drunk alcohol, and 23.4% had used marijuana. During the 12 months before the survey, 14.8% had been electronically bullied, 19.6% had been bullied on school property, and 8.0% had attempted suicide.

During the 7 days before the survey, 5.0% of high school students had not eaten fruit or drunk 100% fruit juices and 6.6% had not eaten vegetables. More than one-third (41.3%) had played video or computer games or used a computer for something that was not school work for 3 or more hours per day on an average school day.

Previously: Adolescent Health Van wins community award for aiming to “help kids turn their lives around”A reminder that texting and driving don’t mix, To reduce use, educate teens on the risks of marijuana and prescription drugs and National Cancer Institute introduces free text message cessation service for teens
Via The Checkup
Photo by Daniel Oines

Cancer, Pediatrics, Research

Study highlights childhood cancer survivors’ increased risk of future health problems

Study highlights childhood cancer survivors' increased risk of future health problems

New research shows that childhood cancer survivors are hospitalized more frequently, and for longer durations, decades after their initial cancer diagnosis as compared to those without a history of cancer. Based on the findings, study author Anne Kirchhoff, PhD, MPH, assistant professor of pediatrics at the University of Utah, advised that patients and families “who have experienced childhood cancer should obtain a cancer treatment summary and recommendations for follow-up care from their oncologist, and coordinate their follow-up care with their oncology and primary care doctors to ensure their health care needs are being managed.”

For the study, which was published in Cancer Epidemiology, Biomarkers & Prevention, Kirchhoff and colleagues recruited nearly 1,500 childhood cancer survivors who were at least five years past their original cancer diagnosis and more than 7,000 individuals who did not have cancer, who served as the control group. According to an American Association for Cancer Research release, study results showed:

… survivors were 52 percent more likely to be hospitalized, and their number of admissions was 67 percent higher, compared with age and sex-matched individuals who did not have cancer. Survivors were also 35 percent more likely to have stayed longer every time they were hospitalized, compared with controls.

More than 10 percent of survivors of central nervous system tumors, neuroblastoma, or malignant bone tumors were hospitalized five or more times during the follow-up period, and the hospital admission rates were approximately two times higher for survivors of neuroblastoma and bone tumors, respectively, compared with controls. “We saw higher rates of hospitalization across most cancer types, but not for all cancers, which gives us clues as to which groups of survivors may need better surveillance in the long term,” said Kirchhoff.

Common reasons for hospitalizations for survivors compared with the controls included conditions like blood disorders (such as anemia) and cancer, although it is unclear if this was for their original cancer diagnosis or new cancers. Infections, nervous system problems, and respiratory problems were other leading reasons for hospitalization.

To follow up on these findings, researchers are planning to further study the reasons survivors are hospitalized and the costs associated with these visits.

Previously: New Stanford-developed method finds tumors in children without exposing them to radiation, Questioning whether physicians are equipped to care for childhood cancer survivors, Cancer survivor: The disease isn’t a “one-off, one-shot deal”, and Surviving pediatric brain cancer

Stanford Medicine Resources: