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New Drug Helps Twins Harper and Hendrix Regain the Strength to Experience Childhood

Twins Hendrix (left) and Harper were diagnosed with SMA Type II in summer 2015. They have made tremendous progress since beginning a breakthrough treatment in February 2017 at Seattle Children’s.

Spinal Muscular Atrophy (SMA) had progressively taken away the strength of 3-year-old twin brothers Harper and Hendrix to lift a cup of water, crawl or even take a deep breath on their own. Without access to a breakthrough treatment for the incurable genetic condition, the regression of their motor skills was certain to continue, potentially to the point that it was life-threatening.

So moments like the one that unfolded between Harper and Hendrix in a Seattle Children’s recovery room shortly after their fourth infusion of the new SMA drug, Spinraza, represented much more than brotherly play to their parents, Crystal and Noe Ramos.

Harper raised his right arm high above his head and paused briefly before snapping it down in front of him as he released a makeshift ball of medical tape and paper. The object bounced and then skidded on the floor before it came to rest near Hendrix, who gave it a casual glance before returning his attention to the iPad in his lap he gripped firmly with his fingers.

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Study Looks at Harnessing Fitness Technology and Social Media to Encourage More Active Lifestyles Among Cancer Survivors

Physical activity may be one way for teen cancer survivors to reduce their risk of several chronic conditions. A team led by researchers at Seattle Children’s recently tested the practicality of using a Fitbit Flex and Facebook to help encourage physical activity among survivors.

The battle against cancer continues well after remission for many adolescents and young adults. Cancer survivors are at increased risk to develop chronic diseases like obesity, type 2 diabetes, high blood pressure and second cancers.

Physical activity can be an important factor to help lower the risk of developing these conditions while providing an increased quality of life among survivors. However, many studies have shown that cancer survivors maintain a lower level of physical activity than their peers.

A team of researchers led by Dr. Jason Mendoza at Seattle Children’s Center for Child Health, Behavior and Development and Dr. Eric Chow at Seattle Children’s Cancer and Blood Disorders Center recently tested the feasibility of a mobile health intervention aimed at encouraging increased physical activity among teen cancer survivors. The team tapped into wearable fitness technology, the Fitbit Flex, social media and self-determination theory (SDT) to develop an approach that meets teen cancer survivors where they’re at. Read full post »

Bioethics in Action: Josie’s Story

Josie, with her father, Luis, first came to Seattle Children’s when she was 2 months old.

Josie came to Seattle Children’ Emergency Department when she was 2 months old after acquiring a virus and going into respiratory distress. She was also in the beginning stages of heart failure.

Statistically, she was lucky to have made it that far.

Before birth, Josie was diagnosed with Trisomy 18, a life-threatening condition caused by an extra chromosome that disrupts the typical pattern of development in significant ways. Only about 5 to 10% of children with Trisomy 18 survive beyond their first year of life.

“I didn’t expect her to live that long,” said Josie’s mother, Jenny Castillo. “I hoped we would at least have a few days or weeks with her, and we’ve been thrilled with all the time we’ve had.” Read full post »

Study Prompts Call for More Mobile Laboratories to Enhance STEM Education for Youth

Hands-on experiments offered by many mobile science labs, like Seattle Children’s Science Adventure Lab, have been shown to positively impact test scores and drive interest in STEM subjects.

Researchers are calling for a greater focus on science, technology, engineering and math (STEM) education after a new study illustrated the reach and positive impact of mobile science labs in driving continued STEM interest in children in the U.S. – an interest researchers believe educators must work to foster as the demand in the STEM job market continues to grow.

Previous studies have reported that nine of the 10 fastest growing occupations in the U.S. require STEM skills and education, and employers are seeking workers already equipped with STEM knowledge. But according to the 2015 National Assessment of Educational Progress (NAEP)—known as “The Nation’s Report Card”— only one-third of high school students have the STEM skills needed for college-level classes and a career in STEM.

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Seattle Children’s Becomes Nation’s First Salmon-Safe Certified Hospital Campus

Seattle Children’s recently became the nation’s first hospital campus to earn Salmon-Safe certification. The planning and work from staff like groundskeeper Meghan Fuller aims to reduce the campus’s impact on the surrounding land and aquatic plant and animal life.

Seattle Children’s philosophy on sustainability is centered around its mission to help every child live the healthiest and most fulfilling life possible.

“When we do good things for the planet, we help take care of our patients and all children,” said Colleen Groll, Seattle Children’s manager of sustainability programs. “Children are one of the most affected populations by climate change and pollution, so it’s really important that we are a leader in reducing our impact on the environment.”

That organizational mindset and Seattle Children’s longstanding commitment to the environment recently inspired it to achieve certification as the nation’s first Salmon-Safe hospital campus. The distinction is attained by meeting peer-reviewed criteria and performance standards that demonstrate environmental stewardship in areas that directly impact the urban watershed. This includes minimizing impacts of development on sensitive aquatic and land resources; and protecting downstream water quality through landscape management practices, habitat restoration and facility performance—like waste reduction and responsible water use.

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Researchers Aim to Put an Agonizing Problem for Adolescents With Chronic Pain to Rest

Nicole Reeder and her mother, Susan, both participated in the I-SPY study to address Nicole’s migraine and sleep issues. Nicole is now benefiting from extended quality sleep and diminished headache pain following the study.

Days filled with pain, followed by restless nights, are more than nightmare scenarios for adolescents with chronic pain. Approximately half of all adolescents who suffer from chronic pain also have insomnia, a disorder characterized by difficulty falling asleep, staying asleep and experiencing poor quality sleep.

While there is ample research studying effective methods to treat adults who experience chronic pain and insomnia, there is very little as it pertains to adolescents. Seattle Children’s Research Institute is leading the way in changing this with an approach that focuses on empowering patients to improve their sleep to help treat their pain.

Dr. Tonya Palermo, an international expert in pediatric pain management at Seattle Children’s Research Institute, led a study recently published in the Journal of Clinical Sleep Medicine. The study showed four brief sessions of cognitive behavioral therapy for insomnia (CBT-I) led to sustained improvement in sleep quality, psychological symptoms, and quality of life for adolescents experiencing insomnia and a co-occurring physical or mental health condition such as chronic pain, anxiety or depression. Read full post »

Study: PAL Program Drastically Reduced State’s Antipsychotic Prescriptions for Children

The Partnership Access Line (PAL) has helped reduce antipsychotic prescriptions for Washington children enrolled in Medicaid by 49% since 2006.

Antipsychotic prescriptions for children enrolled in Washington state’s Medicaid program decreased by nearly half following the implementation of an innovative psychiatric consultation program affiliated with Seattle Children’s, according to a study published in the March 2017 issue of Health Services Research.

The 49% reduction in prescriptions from July 2006 to 2013 is a reversal from the steady statewide growth in the use of antipsychotics to treat children prior to the introduction of the Partnership Access Line (PAL). The number of children on Medicaid treated with antipsychotics in Washington decreased by 940 despite an increase of 186,855 enrollees in the joint Federal/state program during the study. According to the study, this counters a national trend of increased antipsychotic use with children from 2002 to 2015.

Other key findings in the study include:

  • High-dose antipsychotic use fell by 57.8% in children 6 to 12 years old; and by 52.1% in teens
  • 1,458 providers received a direct patient consult through PAL
  • 759 providers attended at least one of PAL’s 31 general psychopharmacology education conferences

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Study Links Exposure to Common Chemicals During Early Pregnancy to Altered Hormone Levels in Fetus

Food is the most likely source of exposure to the most harmful phthalates, which can also be found in household and personal care products.

Exposure during early pregnancy to some phthalates—man-made chemicals commonly found in household plastics, food and personal care products—can have adverse impacts on developing fetuses, according to a new study led by Dr. Sheela Sathyanarayana, a pediatric environmental health specialist at Seattle Children’s Research Institute and associate professor at the University of Washington.

The study, published in The Journal of Clinical Endocrinology & Metabolism, found that increases in exposure to certain phthalates during the first trimester of pregnancy was associated with higher estrogen concentrations and lower testosterone concentrations in the fetus, thus increasing the chance of a genital abnormality in male babies at birth.

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Patient Families SHIFT to Peer Advisors as Weight Management Treatment Study Progresses

Heather Armstrong and her daughter, Lauren, saw positive results from their time in the SHIFT study last year. Armstrong is now a SHIFT peer interventionist helping other families.

Heather Armstrong made a commitment to a healthier lifestyle when she volunteered herself and her 8-year-old daughter, Lauren, for a weight management treatment study at Seattle Children’s Research Institute.

For five months, Armstrong and Lauren attended weekly sessions in the Success in Health: Impacting Families Together (SHIFT) study that provided guidance and education to help them reach and sustain better eating and activity behaviors and ultimately better weight management. The sessions focused on healthy eating, supporting children throughout behavior changes, improving the home environment for physical activity and healthy eating, building confidence and incorporating more physical activity into family life. Read full post »

A Mother’s Intuition Leads to Picture-Perfect Treatment of Eye Cancer

The abnormality in Julia De Vos’ left eye was later identified as retinoblastoma. Julia’s mother, Amanda De Vos, took the photo and was quick to alert the family pediatrician when she noticed the white dot.

Some pictures are worth much more than a thousand words.

Like the picture Amanda De Vos took of her daughter Julia, which helped to identify retinoblastoma, a rare eye cancer that was stopped in its tracks with an innovative treatment at Seattle Children’s.

De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention. The image shows an excited toddler in dinosaur pajamas, her open mouth featuring three new bottom teeth.

An off-white glow in Julia’s left eye gave De Vos pause. It was an abnormality De Vos hadn’t seen previously in any of the thousands of pictures she had taken. The pupil in Julia’s right eye had a red dot in it—a common photographic nuisance that results when light from a camera flash reflects off the retina in the back of the eye. Read full post »