On the Pulse

Wedding wish becomes a reality for patient family thanks to cancer care team

The Olivera's wedding day

Photo courtesy of Soulumination

Tuesday was a day that the Olivera family will never forget – It was a beautiful day of unity, celebration and joy. It was a bright spot in what has been one of the most challenging years of their lives.

Oct. 22 was the day that Saul and Alejandra Olivera were finally able to get married after three years of being engaged. “Making it official” was something they were very excited to do and something their 9-year-old daughter, Miranda, had wished for.

From a limo, cake, caterer and photographer, to a chocolate fountain (the most important element for Miranda) – the big day was complete. And it all became a reality, within one week’s time, thanks to three members of Miranda’s cancer care team at Seattle Children’s who made it happen with the help of the community.

“It was the most amazing day and we couldn’t have asked for anything more,” said Alejandra. “Everything was perfect and Miranda was so happy to be there and be a part of the celebration.”

Now, this wasn’t just any wedding – it was extraordinary. And in order to understand its significance, it’s important to understand the family’s journey, as well as the people that were behind the important day.

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The story behind Landon Browne: The 7-year-old who honored his surgeon by dressing up as him for Halloween

Landon Browne and Dr. Jay Rubinstein

During a recent visit to Seattle Children’s, 7-year-old Landon Browne dressed up as his favorite surgeon, Jay Rubinstein, to honor and celebrate him at this Halloween time of year. We suspect you saw the related media coverage, and wanted to share more about Landon, who has captured the public’s interest.

There are landmark moments in every child’s life that a parent likes to document. The first time he rolls over, crawls, stands and walks are among the moments worth noting. But for Alysia and Brendan Browne, the moments they got really excited about for their son, Landon, relate to his hearing.

“When he said, ‘butter’ for the first time, I threw open the front door and yelled, ‘He said, butter!” The neighbors probably thought I was crazy,” Alysia said, with a smile.

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Children’s fights to ensure all Washington families have access to the health services they need

UPDATE: Seattle Children’s reached an agreement with Molina Healthcare of Washington and Children’s is an in-network provider on the plans Molina offers through the state’s Health Benefit Exchange.

National healthcare reform has dominated headlines with the recent government shutdown and the opening of Healthcare Exchanges across the country, offering health benefits to individuals, families and small businesses who are not currently insured.

Seattle Children’s Hospital is taking a stand on the issue, working hard to ensure that children in Washington have adequate access to the care they need, when they need it.

On Oct. 4, Children’s filed a lawsuit against the state’s Office of the Insurance Commissioner (OIC) citing the failure of the OIC to ensure adequate network coverage in several of Washington’s Health Benefit Exchange plans. The suit aims to make sure that children can access the health services they need through the insurance plans purchased via the state’s Exchange, a new marketplace where individuals and families can find, compare and buy insurance.

Today, Children’s is going a step further and filing an administrative appeal requesting the OIC to reverse its decision to approve the Exchange plans from Coordinated Care Corporation (aka Ambetter), Molina Healthcare of Washington, Premera Blue Cross (including LifeWise) and Regence (aka BridgeSpan) because they do not provide adequate network access for plan enrollees. The appeal also asks the OIC to reconsider how it approves Exchange plans so that only plans with adequate networks are approved.

Here, Dr. Sandy Melzer, senior vice president and chief strategy officer at Children’s, answers a few questions about the actions that Children’s is taking to encourage the state to guarantee adequate coverage for kids and families in Washington.

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5 things you should know about a social worker’s role at a pediatric hospital

While many people believe social workers only step in when problems arise, they are often there from the beginning and can be a family’s biggest ally, problem solver and an invaluable resource.

At Seattle Children’s Hospital, social workers are critical to the integrated teams. As families meet with pediatricians, nurses, speech therapists and surgeons, social workers keep in touch with all team members to ensure that each patient is provided with the resources and support they need.

As a social worker in our Craniofacial Center for the past six years, I really enjoy working with our patients and families. I have worked with hundreds of families to help them navigate a difficult diagnosis, sift through medical jargon or just provide a helping hand.

In my experience, here are five things that you should know about the important role that social workers play in a pediatric hospital like Seattle Children’s.

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Lessening the growing pains with teen heart transplant transition day

Teen transition day group talk

Transitions are a part of life. Becoming more independent, turning 18 years old, planning for college – these are transitions every teenager must face. It’s the gray area between adolescence and adulthood, a time when most teenagers step out from the shadows of their parents and head into the world in search of self-sufficiency. For some, however, this can be daunting, especially when it comes to taking ownership of one’s own health.

For a group of 11 teenagers at Seattle Children’s Hospital who have all at one time or another had a heart transplant, their transition means taking a more hands on approach to their personal health.

They are now old enough to be the drivers of their own healthcare decisions and they are old enough to transition out of Children’s to continue care at adult institutions. Read full post »

Tips for identifying, treating and reducing risk of three common fall sports injuries

Breaking the TackleShorter days and cooling temperatures mean school is in full swing. While it’s important to help students succeed in the classroom, it’s also important to arm them with the right tools and information for a fun and safe fall sports season.

Monique Burton, MD, director of Seattle Children’s Sports Medicine Program, shares tips for identifying, treating and reducing risk of concussions, anterior cruciate ligament (ACL) injuries and shin splints – three of the most common fall sports injuries in young athletes. Each year, Burton and her team provide care and rehabilitation to hundreds of athletes in the Puget Sound.
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The inner ear may hold a clue in the quest to find the cause of SIDS

Infant ear

Daniel Rubens, MD, is not your average researcher. He’ll tell you for starters, that he’s not technically a researcher, but rather an anesthesiologist. His team is small:  Travis Allen, a nurse anesthetist at Seattle Children’s, volunteers his free time to work alongside Rubens, who is also supported by staff and leaders at Seattle Children’s Research Institute and the University of Washington.

Since 2007, Rubens has spent no more than $100,000 on his research on SIDS, or Sudden Infant Death Syndrome. A big chunk of those funds, $60,000, came from a fundraiser held in Florida by a mother who lost her child to SIDS. She read about Rubens’ research, contacted him out of the blue and wanted to support his efforts.

Rubens’ experience dealing with infants in crisis inspired him to seek an answer to the unsolved mystery of SIDS, and his latest study published in Neuroscience—offers up more clues on the premise that the syndrome may be related to dysfunction within the inner ear. “I was always drawn to the mystery of SIDS,” Rubens said. “I’ve read the literature over the years, and it struck me that there’s so much we don’t know,” he said, when asked what initially piqued his interest.

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Addressing ADHD Improves Academic and Social Success

At every moment of every day, the human brain processes a constant, and natural, barrage of stimuli. At multiple levels, including below consciousness, our brains constantly filter through these competing stimuli to prioritize those that help us respond, begin a task, take steps toward a larger goal and behave in socially appropriate ways.

For people with attention deficit hyperactivity disorder (ADHD), something is amiss in the brain pathways that filter through these competing impulses. Those affected with this neurological condition have difficulty sorting out relevant stimuli from non-relevant stimuli, and may respond impulsively or not respond when a quick response is required. In the classroom, children with ADHD have difficulty focusing on school or homework, sustaining their attention for things they are not interested in, and some (especially younger children) have difficulty sitting still.

Between 9 percent and 11 percent of school-aged children (4 to 17 years of age) in the U.S. have been diagnosed with ADHD – about 13 percent of boys and 5.5 percent of girls.

Though people with ADHD can be very successful in life, without proper diagnosis and treatment, this condition can have serious consequences, like:

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Sex, Drugs ‘n Facebook

Facebook homepage

Those three attention-grabbing words can often make parents a bit uneasy when they think about how they relate to their kids. The words are also the title of a new book from Megan Moreno, MD, who heads up the Social Media & Adolescent Health Research Team at Seattle Children’s Research Institute.

Moreno is an adolescent medicine specialist at Seattle Children’s and she sees patients on a regular basis. Her aim, based on her research, is that healthy Internet use will one day be discussed in the same way we tell young people to get enough sleep, to drink in moderation and to eat healthy foods. She even sees it as a topic that will be brought up in the doctor’s office one day. Have you had your vaccinations, talked about safe sex and discussed your Facebook and Twitter habits?

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Patient Voices: Kat becomes titanium girl, makes a difference for future cancer patients

Hello my name is Kat Tiscornia and up until March of 2013 I was your typical 8th grader. I loved horseback riding, eventing to be more specific, skiing and spending time with friends and family. Then it all changed. I went to the doctor to have a large bump on my thigh checked out.  I was told what I thought might be a bad bruise had a high probability of being cancer.

After many tests, two biopsy surgeries for my lung and my leg, and a stressful couple of weeks, I was diagnosed with a rare form of bone cancer called Ewing sarcoma. There are approximately 200 new diagnoses of the disease in the U.S. each year. Read full post »