On the Pulse

Medical Mom Educates Others about Mitochondrial Diseases

Jennifer Mhyre is a medical researcher with a PhD in neuropharmacology. She has read more than her fair share of medical and scientific books throughout her career. But when daughter Katelyn was diagnosed with mitochondrial disease almost four years ago, Mhyre and her husband (who also has a PhD in neuropharmacology) reached for the textbook.

Ashley, Andrew, Katelyn & Jennifer Mhyre

“I knew what mitochondria were, but had never heard the term ‘mitochondrial disease,’” said Mhyre. “I went to my graduate school general pharmacology class book and looked it up.” Mhyre also went online and did more reading. She found that mitochondrial disease was only recently recognized as a disease class, and was just as common as childhood cancer. Read full post »

Parents of Kids with Chronic Pain Benefit from Psychological Therapies, Too

Parenting a child with a longstanding or life-threatening illness—including chronic pain, cancer, diabetes, asthma and traumatic brain injury—can have a negative impact on many aspects of a parent’s and family’s life.   Parents often have difficulty balancing care for their child with other responsibilities such as work, social life, finance and household tasks.

But there are very few programs in the world that address these issues for parents of children with chronic pain, based on a new Cochrane Review published August 15.

Cochrane Reviews are systematic reviews of primary research in healthcare and health policy, and are internationally recognized as the highest standard in evidence-based healthcare.  Tonya Palermo, PhD, of Seattle Children’s Research Institute is a co-author of “Psychological therapy for parents of children with a longstanding or life-threatening physical illness.”

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Hot Cars and Kids – a Deadly Combination

What can happen when otherwise attentive parents get distracted

For most of us, especially those of us in the Pacific Northwest, when the sun comes out our moods improve with the increase in temperature. Unfortunately, what also increases is  the number of children who die from hyperthermia or overheating of the body, after being unintentionally left in a car.

On average, 38 children in the U.S. die in hot cars each year. The numbers typically begin to increase in May with 3 deaths per month. By July and August, this surges to 9 deaths per month.  Although the majority of deaths occur in warmer states such as Texas, it can happen anywhere. Just this week, the National Highway Traffic Safety Administration (NHTSA) reported that in the first week of August, eight children across the U.S. have died from heatstroke in hot vehicles. Read full post »

Youth Violence: What Can We Do?

As we mourn those lost in the recent string of shootings, we feel intense sadness, fear and confusion. We are shocked by what some human beings are capable of and afraid what other dangerous individuals may lurk in our communities. The media dramatizes these unthinkable crimes until they take on fictional proportions, making them seem foreign, distant and unreal.

Violence is an everyday reality

However, violence in the lives of our young people is a daily reality that does not always make the nightly national news.

  • According to 2009 data, an average of 16 people between the ages of 10 and 24 are murdered daily in the United States.
  • In a national survey of teenagers, six percent skipped school in the previous month because of fears of violence.
  • Just under 700,000 youths receive emergency medical care yearly for injuries from violent assaults.[i] Read full post »

New Study Links Violent Videos to Sleep Problems in Preschool Children

Parents who suggest and use healthy media options with their children can improve sleep outcomes, according to a new study from Michelle Garrison, PhD, and Dimitri Christakis, MD, at Seattle Children’s Research Institute.  “The Impact of a Healthy Media Use Intervention on Sleep in Preschool Children,” was published online today in Pediatrics.

Child watching televisionThe latest research also adds evidence that the relationship between media and sleep in preschool children is one of cause and effect.  Kids whose parents were encouraged to change the channel to age-appropriate and non-violent content had significantly lower odds of sleep problems in the study, and this effect persisted across the intervention year, but faded six months after the program ended. Read full post »

The Cat Immersion Project: The Next Best Thing to Being There in Purrrson

Many of the cancer patients at Seattle Children’s Hospital are here for months at a time and far from the comforts of home – including the presence of their much-loved family pets. To make matters worse, these patients often need to be in isolation due to their compromised immune systems, cutting them off from the social support that can be a lifeline during a long course of treatment.

Maga Barzallo Sockemtickem is one such patient. Maga spent more than seven months at Children’s in 2011 waiting for a compatible bone marrow donor, eventually undergoing a transplant. A 16-year-old cat-lover, back at Children’s for post-transplant treatment, Maga is confined to her room and hasn’t seen her beloved cat, Merry, in nearly a month.

The staff at Children’s decided to do something about that. While they couldn’t bring Merry to Maga, they did the next best thing. A call to Children’s Facebook fans to post their favorite cat photos for Maga sparked an overwhelming response: fans sent more than 3,000 photos along with comments and heartfelt get well wishes.

Maga, touched by the outpouring of support, responded with …”You guys remind me that there is so much good in the world, and it just makes me feel so much better, and connected. I can’t tell you how it feels sometimes, feeling disconnected and cut off from the world, and then with something like cat pictures bringing me back. Thank you all for your kind words, and well wishing. Its means more than you can ever know. Thank you. Thank you. Thank you…”

With more than enough photos, staff got to work and created the Cat Immersion Project. Using the photos fans sent and adding some creative magic with sound, sheets, and projectors, they created a virtual cat cocoon, making Merry seem just a little bit closer.

Watch Maga experience the Cat Immersion installation for the first time:

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Do Sports Derail Children’s Healthy Eating Habits?

A new study says “yes.”

University of Minnesota researchers interviewed the parents of 60 youth basketball players and found that the young athletes commonly had sweets, such as candy, ice cream and doughnuts; pizza; hot dogs; salty snacks, including chips, nachos and cheese puff and soda and sports drinks.

The parents also reported frequent visits to fast-food restaurants when their children were playing sports.

And, even though the parents agreed that these foods and beverages are unhealthy, they said rushing to practices and games made them rely more on these types of products due to their convenience. Read full post »

Social Networks Serve as Source for Parents

As a medical resident, Dr. Ben Wilfond remembers working with a family whose baby had trisomy 21 (down syndrome).  He was with the physician when she first talked with the family about their new baby.  “She walked in, introduced herself, and the next thing she said was, ‘Congratulations on your baby,'” Wilfond said. The remark took him by surprise.  “As a resident, I could see the problems this child was having and I knew some of what was ahead for this family.  But the doctor did not deprive them of their celebration, and she chose not to focus on the fact that the child had a disability.”

This situation isn’t always the norm. Dr. Wilfond is a co-author of a new study published in Pediatrics that found parents with children with trisomy 13 and 18 have challenging encounters with health providers.  Children born with trisomy 13 and 18 have low survival rates and survivors have significant disabilities.  They have traditionally been treated with palliative care.  Read full post »

Cystic Fibrosis Researcher Christens Petroleum Barge that Bears her Name

Physicians and researchers can get any number of awards over the course of a career.  Landing a Nobel Prize is the tops, of course.  But Bonnie Ramsey, MD, received a different sort of honor this week.  She christened a petroleum barge in Portland that bears her name.  Dr. Ramsey is quite excited about the honor, even if it doesn’t seem very medically mainstream.   

Barge christening by Dr. Bonnie Ramsey“It’s a unique award,” she said.  “It’s not the sort of thing most people get, to have something that huge be named after you,” she said, with a smile.  Barges can measure more than 400 feet long, bigger than a football field.  A barge of this size carries more than 3.5 million gallons in fuel, too.

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Researcher Heads to Africa to Curb Respiratory Distress Syndrome

Uganda RoadBright blue skies, lush green fields, jungle and red earth were among the sites Kathleen Bongiovanni saw on her recent trip to Uganda.  She visited this country in East Africa as part of a month-long research trip.  Bongiovanni, a program manager in the Center for Developmental Therapeutics at Seattle Children’s Research Institute, went to determine whether or not a foam stability test would be acceptable to clinicians, birth attendants and mothers in Uganda, particularly in rural areas.  The test—a simple process conducted with fluid suctioned from a newborn’s mouth—would be a new way for doctors and other trained healthcare workers to easily and inexpensively diagnose lung immaturity in premature infants.

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