Stories about: Pediatrics

The diagnostic odyssey: Parents shed light on their experience

the diagnostic journey
Robert Salmon: Storm at sea (Wikimedia Commons)

Nikkola Carmichael, MS, CGC, is a parent and a genetic counselor in the adult genetics clinic at Brigham and Women’s Hospital. Her research was conducted as part of her master’s degree in genetic counseling in conjunction with colleagues at Boston Children’s Hospital.

When a parent or provider first becomes concerned about a child’s development, a diagnostic odyssey begins. It may be brief or can stretch for years as a child undergoes multiple procedures and medical appointments in the search for a diagnosis.

This is a challenging time for families. While learning to address their child’s health needs and fearing for the future, parents may have difficulty accessing support services due to the lack of a diagnosis. Against this backdrop of emotional turmoil, parents strive to support their child through medical procedures that can be painful or frightening.

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What we’ve been reading: Week of May 18, 2015


From cancer to feet: the power of Twitter in healthcare (MedCity News)
Why does Twitter care about the healthcare industry? Craig Hashi, one of two Twitter engineers dedicated to healthcare, details the opportunities.

MIT’s implantable device could help docs determine best cancer medicine (Boston Business Journal)
Removing the trial and error associated with cancer drug treatments is high on oncologists’ wish lists. Heeding that call, MIT has developed an implantable device (about the size of a grain of rice) that can carry up to 30 different drug doses to a cancerous tumor, and then be removed to test responses.

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Is that fever a problem? Ask Thermia

Thermia fever calculator HealthMap

Your child’s forehead is warm, and you just took her temperature. The next question is, what to do about it? We all know that an average normal temp is 98.6°F, but is 100° a problem? Should 102° be a concern?

This is where Thermia comes in. It’s an online fever calculator developed by the HealthMap team at Boston Children’s Hospital. Essentially, it’s an educational tool aimed at helping concerned parents interpret a child’s temperature and understand which steps they should consider taking.

“I’m a father of two, and I still wonder sometimes what a temperature actually means,” says HealthMap co-founder John Brownstein, PhD. “We realized that there really aren’t any fever calculators out there to help parents answer that question.

“Our idea with Thermia,” he adds, “was to arm families with information so they don’t panic when their child has a temperature.”

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Protecting the brain in newborn bloodstream infections


Preterm infants in neonatal intensive care units, particularly those with catheters and intravenous lines, are at high risk for bacteremia—bloodstream infections that can cause lasting brain injury. A new study may change how people think about these infections, suggesting that inflammation is as important to address as the infection itself.

Using a novel mouse model of bloodstream infections in newborns, infectious disease physician-researcher Ofer Levy, MD, PhD, demonstrates that bacteremia can damage the brain even when the bacteria don’t actually get into the central nervous system. Findings were published online last week in the Journal of Infectious Diseases.

“There has been a lot of indirect epidemiologic evidence for a link between bacteremia, inflammation and cerebral injury, but it showed only a correlation, not causation,” says Levy. “Here we demonstrate directly in an animal model that inflammation alone can cause brain injury in newborns with bacteremia, even without entry of the bacteria to the central nervous system.”

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Pediatric innovators showcase highlights inventions

Innovators Showcase Boston Children's HospitalSome great inventions were on view this week at the second annual Boston Children’s Hospital Innovators Showcase. Hosted by the hospital’s Innovation Acceleration Program and Technology & Innovation Development Office, the event featured everything from virtual reality goggles with gesture control to biomedical technologies. Below are a few new projects that caught Vector’s eye (expect to hear more about them in the coming months), a kid-friendly interview about the SimLab and list of inventions kids themselves would like to see. (Photos by Katherine Cohen except as noted)

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First six months of life are best for stimulating child heart growth

In these sample sections of mouse heart, the color blue signifies scar tissue. Damage from scarring was minimized by early administration of the drug neuregulin.

Developing a child-centric approach to treating heart failure is no easy task. For one thing, the underlying causes of decreased cardiac function in children vastly differ from those in adults. While most adults with heart failure have suffered a heart attack, heart failure in children is more likely the result of congenital heart disease (CHD), or a structural defect present at birth that impairs heart function. And most therapies designed for adults haven’t proven equally effective in children.

Stimulating heart muscle cells to regenerate is one way cardiac researchers at Boston Children’s Hospital’s Translational Research Center hope to restore function to children’s ailing hearts. In this area, children actually have an advantage over adults: their young heart cells are better suited for regrowth.

Reporting in the April 1 Science Translational Medicine, Brian Polizzotti, PhD, and Bernhard Kuhn, MD, demonstrate that not only does the drug neuregulin trigger heart cell regeneration and improve overall heart function in newborn mice, but its effects are most potent for humans within the first six months of life.

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What we’ve been reading: Week of March 30, 2015

shutterstock_175074977Bubble wrap used for cheap blood and bacteria tests (New Scientist)
Snap, crackle, pop are the familiar sounds of bubble wrap. According to George Whitesides at the Wyss Institute for Biologically Inspired Engineering at Harvard University, the cheap packing material may be popping up in the near future as a diagnostic tool, replacing costlier 96-well plates.

Nearly half of all pre-schoolers with ADHD are on medication (Washington Post)
The American Academy of Pediatrics calls for children under 6 with ADHD to engage in behavioral therapy before taking medication. Yet according to a national survey published in the Journal of Pediatrics, nearly half of preschool-aged children are on medication for the condition, and more than a fifth were receiving neither of the recommended therapies.

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Meet Huggable, the robotic teddy bear designed for sick kids

Nobody likes being confined to a hospital bed. Children especially can feel lonely, bored or scared in these situations. Hours feel like days, and they may not be able to fully understand or describe why they are there.

Child life specialists have long understood that tapping into playtime can bring up information about a child’s social and emotional needs that might not be revealed in more structured clinical assessments. But what if you cannot physically be in the room?

Deirdre Logan, PhD, Director of Psychology Services in Pain Medicine, and Peter Weinstock, MD, PhD, Director of the Boston Children’s Simulator Program (SIMPeds), may have found the answer. Along with a dedicated, multidisciplinary research team from Boston Children’s, MIT’s Media Lab, and Northeastern University, they have designed a robotic teddy bear that may be able to supplement care team interactions on inpatient units.

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SXSW Interactive 2015: Our future selves, a maturing health tech industry and why failing is productive

SXSW Impact Pediatric HealthJudy Wang, MS, is a program manager in the Telehealth Program at Boston Children’s Hospital.

In 2012, when I attended the South by Southwest (SXSW) Interactive conference for the first time, health tech was still an emerging field. It was the first year the world’s leading conference for emerging technology and digital creativity made any effort to include health tech programming, and the first time its Accelerator pitch event included a category for health tech startups.

Only three years later, SXSW Interactive (March 13­–17, 2015) has grown to include almost 50 events related to health and medical technologies. Martine Rothblatt, CEO of the biotech company United Therapeutics, gave a keynote titled “AI, Immortality and the Future of Selves” that was both inspiring and provocative. She spoke to a world in which our 24/7 selves are increasingly being captured digitally. Audience questions captured by Twitter pondered the ethical implications of what Rothblatt called “mind clones”: future mechanical beings digitally programmed with our mannerisms, habits and memories.

This year also featured the Impact Pediatric Health pitch competition, captured in this Storify.

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Yes, poor vaccination rates are fueling the 2015 measles outbreak

CDC measles outbreak map vaccination Disneyland

There’s been a lot of speculation about whether low vaccination rates are feeding the 2015 U.S. measles outbreak, which as I write this stands at 145 cases across seven states. Well, we can stop speculating, because the numbers are in, and measles is taking advantage of pockets of inadequately vaccinated people.

That’s the stark, unequivocal message from a study by epidemiologists at Boston Children’s Hospital, published this week in the journal JAMA Pediatrics.

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