On the Pulse

Juvenile Arthritis Can’t Stop Izzy From Dashing Through the Snow

Seattle Children’s nurse practitioner Amber Bock (right), has been vigilant in managing her daughter Izzy’s care since she was diagnosed with arthritis at age 2.

In downtown Seattle on Dec. 8, hundreds of festive runners dressed up for the Arthritis Foundation’s annual Jingle Bell Run.

Among them was sassy 3-year-old Izzy Bock, who scampered down Fifth Avenue dressed as Cindy Lou Who from The Grinch. Onlookers would likely never have guessed this energetic child has juvenile idiopathic arthritis.

“How long had she been in pain?”

Juvenile arthritis is an autoimmune disorder causing inflammation of joints which can be associated with pain and stiffness, and can affect range of motion.

It is often challenging to diagnose juvenile arthritis in young children.

“Often, kids don’t complain of pain,” says Seattle Children’s rheumatologist Dr. Sriharsha Grevich. “They would rather focus on playing. Parents may not notice something is wrong until their child starts limping or shows other signs.”

This was the case for Izzy, whose mother, Amber Bock, is a nurse practitioner in Seattle Children’s Medically Complex Child program. When Izzy was 2 years old, she came home from daycare with a swollen ankle after tripping on a climbing structure. Amber took her daughter to an urgent care clinic, but X-rays didn’t reveal any serious injury. Read full post »


Aliyanna Overcomes the Odds, Celebrates Her Second Birthday with Her Care Team

From the first time Daisy Martinez heard the thumping of her baby’s heartbeat, she was in love. She always wanted to be a mother and hoped for a baby girl. She even had a name picked out: Aliyanna.

When doctors confirmed Martinez was having a baby girl, she was elated. Unfortunately, her joy was short-lived. During an ultrasound 25 weeks into her pregnancy, the ultrasound technician noticed something amiss. A large lump was growing on Aliyanna’s spine. Read full post »


Ciara and DeAndre Bring Holiday Cheer to Seattle Children’s

The joyful sound of caroling could be heard echoing through the halls of Seattle Children’s and Odessa Brown Children’s Clinic (OBCC) this week thanks to two very special visitors, Ciara alongside her and Russell’s new music artist DeAndre. They handed out toys and gift cards to patients and families at the hospital and delighted families with classic holiday songs.

“I’m so grateful we got to come and sing for you all today,” Ciara said. “We believe in you and we’re rooting for you,” she added.

In the inpatient playroom at the hospital, patients and families were overjoyed. They sang along, with some children singing at the top of their lungs with huge smiles on their faces, and others dancing happily to the cheerful tunes. Read full post »


Harper Models to Inspire the World: “You’re Beautiful in Your Own Skin”

From day one, Harper Foy has defied the odds. When she was born, she was given a 50% chance of survival. Today, the spunky toddler, who loves to dance, sing and pose for photos, is 4 years old and inspiring many.

“Harper is here for a reason,” her mother, Angie Foy, said. “She’s making a difference in the world.” Read full post »


Ellie Soars Thanks to Breakthrough Cystic Fibrosis Therapy

Ellie Osterloh, 17, participated in the clinical trial for Trikafta, a breakthrough cystic fibrosis therapy approved by the U.S. Food and Drug Administration in October 2019. Photo courtesy of Audrey Redfern.

When 17-year-old Ellie Osterloh spins high above the ground from a lyra, a circular hoop used in aerial acrobatics like Cirque du Soleil, she feels empowered.

“On the lyra, it’s an incredible feeling to be so high in the air with no harnessing,” Ellie said. “It’s a lot of adrenaline and I feel like I can do anything.”

Now, thanks to Trikafta, a new drug approved in October 2019 by the U.S. Food and Drug Administration (FDA), Ellie, who participated in the clinical trial for the drug, shares a similar zeal for her future.

“Even though it’s hard sometimes to be so optimistic, I’ve always thought it might be possible to go to college and have kids and a family of my own,” she said. “It’s crazy how my outlook has changed. I’m still processing all the possibilities.”

That’s because Ellie has lived her entire life with cystic fibrosis, a rare, progressive, life-threatening disease. She had her first appointment with Dr. Bonnie Ramsey, the director of Seattle Children’s Center for Clinical and Translation Research, still in her mother’s womb. Hours after birth she was transferred to Seattle Children’s where she began intensive therapy that she’s continued over the last 16 years.

“This is a really big step forward for Ellie and other people living with cystic fibrosis,” said Ramsey, a pioneer in cystic fibrosis treatment. “Ellie is a highly talented young lady with a bright future ahead of her.” Read full post »


Fine-Tuning CAR T-cell Immunotherapy to Benefit More Kids

Madeline Boese was one of the patients in Seattle Children’s PLAT-03 trial.

Chimeric antigen receptor (CAR) T-cell immunotherapy, which reprograms a child’s white blood cells so they can seek out and destroy cancer cells, is making a difference in children’s lives. Currently, Seattle Children’s has multiple trials open that could benefit children and young adults with relapsed or refractory cancers. In October, Seattle Children’s opened a new pediatric research facility, Building Cure, to accelerate discoveries such as immunotherapy.

Seattle Children’s researchers are continuing to realize the promise of CAR T-cell immunotherapy and improve outcomes in difficult to treat pediatric cancers. They are applying knowledge gained from ongoing clinical trials to study effects on the youngest patients, develop new interventions to prevent side effects and boost T-cell persistence, and to better understand resistance to therapy.

Research recently published in major scientific journals and presented at the 2019 American Society of Hematology (ASH) Annual Meeting contributes new insight guiding the evolution of the experimental therapy. Here, On the Pulse summarizes their findings. Read full post »


Researchers Discover Areas in the Brain Where Nicotine Could Disrupt Early Brain Development

Neurons found in the brain stem gives new clue to nicotine, sudden infant death syndrome link. Source: Getty Images.

Researchers at Seattle Children’s Research Institute have discovered that populations of neurons in the brain stem have a previously unrecognized susceptibility to disruption by nicotine during early brain development.

Published in the Journal of Comparative Neurology, their findings offer a clue to how nicotine exposure in utero could have a lasting effect on the brain’s wiring and give rise to negative outcomes like sudden infant death syndrome (SIDS). Read full post »


Teen With Alert Dog Hopes to Help Other Kids With Diabetes

With the support of his alert dog Morris, the latest insulin pump technology and his care team, Cameron is thriving and hopes to be a role model for other kids with diabetes. He shares his experience in time for National Diabetes Month.

Wherever 14-year-old Cameron Hendry goes – school, soccer practice, wakeboarding, shopping, even a trip to Hawaii – a Labrador retriever named Morris follows.

Morris is not only the high school freshman’s beloved pet. He is Cameron’s diabetes alert dog, always there on his left side to monitor his blood sugar and let him know when his level is too high or low.

Seven years ago, Cameron was diagnosed with type 1 diabetes, an autoimmune disease in which blood sugar levels rise because the body stops making insulin. The chronic condition requires lifelong insulin via shots or an insulin pump.

Symptoms of type 1 diabetes include increased thirst, urination and weight loss. Fortunately, Cameron’s parents recognized his symptoms early and took him to Seattle Children’s emergency department. Cameron was diagnosed and his family received intensive education on how to manage his condition, which included checking blood glucose levels and giving insulin shots multiple times each day. There is currently no cure, though promising research is underway.

“Type 1 diabetes is quite a burden day to day on both kids and their parents,” said Erin Sundberg, ARNP, a pediatric nurse practitioner with Seattle Children’s Endocrinology and Diabetes team, who has been seeing Cameron for the past two years. “It requires round-the-clock vigilance because glucose levels can change due to activity and illness, so patients need to check their blood sugar multiple times each day.” Read full post »


New Contract Will Advance Tuberculosis Research

A federal contract awarded to Seattle Children’s will establish a new center to study tuberculosis. Source: Getty Images.

Seattle Children’s Research Institute is one of three recipients of $30 million in first-year-funding provided by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health (NIH), to establish centers for immunology research to accelerate progress in tuberculosis (TB) vaccine development.

The awards provide up to seven years of support for three Immune Mechanisms of Protection Against Mycobacterium tuberculosis (IMPAc-TB) Centers to uncover the immune responses needed to protect against TB infection. In addition to Seattle Children’s, other IMPAc-TB centers will be led by the Infectious Disease Research Institute, also in Seattle, and the Harvard T.H. Chan School of Public Health.

On the Pulse learned more about the significant research that will be funded by this award which has the potential to provide up to $83 million to the Cascade IMPAc-TB Center, led by Dr. Kevin Urdahl, a TB researcher in Seattle Children’s Center for Global Infectious Disease Research. Read full post »


New Initiative Aims to Prevent Youth Suicide

Seattle Children’s Zero Suicide Initiative helps identify and treat children ages 10 and up who are at risk for suicide.

A teenage boy arrives at Seattle Children’s Emergency Department (ED) with an increased heart rate. His parents are scared and unsure of what could be causing their son’s pulse to spike. While the nurse takes the patient’s vitals, she asks him a series of questions about suicide — prompting the patient to share that he tried to overdose on prescription medication the night before. The nurse informs the provider, and an immediate plan is set in motion to further assess not only the patient’s physical health, but his mental health, as well.

A 10-year-old girl enters the ED with a sprained elbow after taking a tumble on the soccer field. Her parents have been taking her to therapy to help with her anxiety, and the therapist communicates his findings with them often. Because she is so young, the therapist has never directly asked the patient if she’s ever had suicidal thoughts. After the ED nurse initiates suicide-screening questions, the girl admits that she has had thoughts about harming herself in the past. Prior to discharging the patient, a mental health evaluator shares resources and information about suicide with the family, and the provider contacts the patient’s therapist and asks the girl’s suicidal thoughts be addressed in their next appointment.

These are just two stories of the more than 500 children who have screened positive for suicide risk in Seattle Children’s ED and inpatient settings over the past six months who presented for concerns unrelated to their mental health. These crucial “catches” were made with help from a new clinical pathway known as Seattle Children’s Zero Suicide Initiative (ZSI), a universal screening method to help identify and treat youth at risk of suicide.

Read full post »