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A New Approach to Caring for Kids with Tuberous Sclerosis Complex

January 25, 2018  |  migrate, Neurosciences, Patient Stories Post Comment

Luke Avansino, now 8, was diagnosed with tuberous sclerosis complex, a rare genetic disorder, as an infant.

Eight years ago, Dr. Jeff Avansino, a surgeon at Seattle Children’s, and his wife, Dr. Amy Criniti, welcomed their third child – a boy named Luke.

For the first few months of Luke’s life, he developed as expected. At about 6 months old, he started having spells of irritability. Avansino and Criniti, both physicians, thought it was likely due to a virus. But Luke’s spells continued.

“My wife has good intuition and knew something was wrong,” Avansino said. “She started looking into his symptoms and thought he might be having infantile spasms, or seizures.”

They took Luke in for tests and Criniti was right – Luke was having seizures. Doctors also found light colored patches on his skin. Further testing confirmed that Luke has a rare genetic disorder called tuberous sclerosis complex (TSC). Read full post »

More Than a Cat Scratch: Baby Spencer’s Brush With Flesh-Eating Bacteria

July 26, 2017  |  Craniofacial, Patient Stories, Pediatric Surgery, Research 2 Comments

At 7 months old, Spencer Nicholson underwent three surgeries to remove dead tissue from a rare disease he contracted due to a cat scratch.

You’ve probably seen it before: something falls, a loud noise ensues, and a cat with an arched back and poofy tail sprints away.

Unfortunately for 7-month-old Spencer Nicholson, when he loudly pulled a bin off a pantry shelf, the family cat was spooked right in his direction. Spencer fell on the floor and the cat, claws out, ran him over. Spencer was left with a deep scratch on his right cheek.

His mom, Kelsey Nicholson, took Spencer to urgent care near their home in Arlington, Washington, where she received a prescription for antibiotics. But hours later, Spencer’s face started to swell. By that evening, Nicholson was so concerned that she took her baby to the emergency room at her local hospital.

Read full post »

Novel Super Glue Surgery Helps Patients Walk, Frees Them From Pain

March 21, 2016  |  Orthopedics and Sports Medicine, Patient Stories, Pediatric Surgery 3 Comments
Going home 2-4-16

Madison Fairchild, 7, post-surgery.

In February, Madison Fairchild, 7, waited patiently with her family in a pre-op exam room at Seattle Children’s Hospital.

As they waited for Madison to be taken into surgery she asked one question: “Are they going to take all the bad things out?”

The simple answer was yes, thanks to a new procedure pioneered at Seattle Children’s that uses a common household item to remove tumor-like growths called venous malformations: super glue.

That’s right, super glue.

Seattle Children’s is currently one of only two centers in the country to offer the new, revolutionary procedure. Read full post »

Team Provides Outpatient Mental Health Therapy for Deaf and Hard-of-Hearing Patients

February 11, 2016  |  Mental Health, Patient Stories Post Comment
Yajaira_Julia

Bedolla (left), 18, has been seeing therapist Julia Petersen from time to time since she was 8 years old.

Yajaira Bedolla was 11 months old when her parents learned she was deaf.

Living in Uruapan, Mexico, Bedolla’s parents searched their town for resources to help with the unknowns of raising a deaf child. The limited resources they found focused on teaching deaf children just to speak, rather than also learn sign language.

They expanded their search and, in doing so, briefly moved to California and back to Mexico before landing in Seattle when Bedolla was 8. Here, they found Seattle Children’s and Petersen, a mental health therapist who provides outpatient therapy and support for deaf patients and their families. Read full post »

Dear Seattle Children’s: Thank You

November 25, 2015  |  Philanthropy Post Comment
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The McKinney family

A hospital can be a scary place, especially for a mother or father of a sick child. Worrying about the cost of care can add a whole new layer of fear. For many families—even if they have insurance—medical bills can be financially devastating. When the postman finally delivers the bill, opening the letter can often be daunting.

But for these families, a letter from Seattle Children’s didn’t bring financial ruin; it brought relief, hope and the good kind of tears. That’s because instead of a bill, the letter contained one simple message: Your hospitals bills are taken care of.

In fiscal year 2014, Seattle Children’s covered $120 million in uncompensated care for families in the region who had little or no resources to pay their medical bills. Uncompensated care, which is made possible in part by donations from the community, helps thousands of families stay afloat when they need it most. Read full post »

Poke and Press: Patients Benefit From New Acupuncture Program

January 8, 2015  |  Patient Care, Patient Stories 9 Comments
Jaime Ralston-Wilson (left) and Elizabeth (Liz) Artola

Jaime Ralston-Wilson (left) and Elizabeth (Liz) Artola

When Gailon Wixson Pursley came to Seattle Children’s, she was in so much pain she couldn’t walk. At 19 years old, Gailon was diagnosed with sarcoma, an aggressive cancerous tumor in her hip flexor muscle.

Gailon’s treatment plan included surgery to remove the large tumor, radiation and chemotherapy, along with a long list of medications to help manage the side effects of her diagnosis and treatments.

Gailon’s mom, Yvette Wixson, asked whether another treatment was available for her daughter: acupuncture. To Yvette’s delight, the answer was yes.

Seattle Children’s inpatient acupuncture program began as a six-month pilot in January 2014. During the pilot, acupuncturists were available four hours a day, five days a week. Before the pilot, acupuncture was available to outpatients, but only on a sporadic, ad-hoc basis for inpatients. Read full post »

Moms Help Fill the GAPPS Repository to Make Healthier Pregnancies

November 4, 2014  |  Neonatology, Research Post Comment
Rohit Nariya, research associate at GAPPS, adds preservative to hundreds of vials before they're added to the collection kits.

Rohit Nariya, research associate at GAPPS, adds preservative to hundreds of vials before they’re added to the collection kits.

What does a pregnant woman in Yakima have to teach a researcher at St. Louis University? How can a Seattle woman’s healthy, full-term pregnancy impact future pregnancies in Europe or Africa? The answers are closer than you might think.

Over the past seven years, the team at the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) – an initiative of Seattle Children’s – has worked to increase awareness, collaborations and research in support of their mission to improve the health of moms and babies worldwide.

One big gap (pun intended) the GAPPS team noticed early on was that a collection of widely-accessible, high-quality, pregnancy-related specimens (like cheek swabs, amniotic fluid and cord blood) for researchers didn’t exist. At the time, researchers who needed these types of specimens had to develop their own methods to collect and store them – a time-consuming and costly process.

Enter the GAPPS Repository: a biobank of pregnancy-related specimens that eligible researchers worldwide can access for their research projects. Read full post »

Stones Clinic Helps Counter Rise of Kidney Stones in Kids

October 28, 2014  |  Patient Care, Patient Stories Post Comment
Ada Zeitz, 2, tries to have some fun at her Kidney Stones Clinic visit while her mom and dad meet with the multidisciplinary team.

Ada Zeitz, 2, tries to have some fun at her Kidney Stones Clinic visit while her mom and dad meet with the multidisciplinary team.

When you hear the term, “kidney stones,” you probably wouldn’t think a blue-eyed, blond-haired 2-year-old is someone who suffers from the painful condition. After all, kidney stones are most common in adults age 40 and older.

Yet over the past decade, prevalence of kidney stones in kids has increased, says Dr. Joel Hernandez, nephrologist at Seattle Children’s Hospital.

It’s this increase that prompted creation of a new clinic at Seattle Children’s – one that exists solely to diagnose and treat kids with kidney stones. Read full post »

Ruth Benfield and Dr. Ed Marcuse begin their retirement by honoring the Journey Program

February 5, 2014  |  Philanthropy Post Comment
Dr. Ed Marcuse, left, and Ruth Benfield, right

Dr. Ed Marcuse, left, and Ruth Benfield, right

Let’s go back…way back, to 1977. The first Star Wars film was released and a gallon of gas cost 65 cents.

That was the year Ed Marcuse, MD, MPH, a young physician who came to Seattle Children’s in 1973, joined the search committee to find a new nursing director for outpatient clinics. Marcuse and the team hired someone with pediatric expertise, leadership potential and passion for Seattle Children’s mission: Ruth Benfield.

Now 37 years later, Benfield, who had become the vice president of Psycho-Social Services, retired on Feb. 3 and Marcuse, medical director for Quality Improvement, will retire one month later.

With their combined 78 years of service, Benfield and Marcuse have left a lasting impression at Seattle Children’s.

But rather than make their retirements a celebration of their careers, they’ve decided to use the occasion to garner support for something they both hold near and dear to their hearts – the Journey Program, a program that helps families cope after losing a child.

Read full post »

Patients at Children’s pick perfect presents in the playroom

December 24, 2013  |  Patient Stories, Philanthropy Post Comment

BreannaClose_webOnce a year, the patient playroom at Seattle Children’s transforms. Usually it’s a place for patients to have fun and play with toys and games. But last Thursday, volunteers and Child Life staff members turned the room into every kid’s fantasy – a toy store where absolutely everything is free.

Every holiday season, Children’s partners with the Starlight Children’s Foundation to host this holiday shopping party for patients.

It’s just one of the many ways Children’s helps kids and their families cope with being at the hospital during the holidays. Read full post »