Patient Care

Our son, Sam, goofing around at home days before he developed a life-threatening form of epilepsy known as febrile infection-related epilepsy syndrome.

Parents David and Jennifer Cowan share how the rapid initiation of a special medical diet known as the ketogenic diet helped their son recover by leaps and bounds after he suffered from a rare, life-threatening form of epilepsy known as febrile infection-related epilepsy syndrome (FIRES). For more about how the ketogenic diet is used to treat epilepsy, please see a Q&A with the ketogenic diet team from Seattle Children’s Neurosciences Center.

Over the summer of 2017, our 4-year-old son Sam came down with a high fever that lasted about a week. Seemingly recovered, a day or two later he awoke as normal, snuggled and watched morning cartoons. But shortly after, and completely unexpectedly, Sam began to seize uncontrollably and stopped breathing. Read full post »

Neurologists at Seattle Children’s prescribe the ketogenic diet for the treatment of epilepsy and other neurological conditions.

Doctors first started using the ketogenic diet to treat patients with epilepsy in the 1920s. While the diet has evolved over the decades to include less strict versions, and is gaining mainstream popularity for weight loss, children with epilepsy and other neurological conditions continue to benefit from its seizure-controlling effects.

The ketogenic diet team at Seattle Children’s Neurosciences Center takes a modern approach to help families use food as medicine. Here, ketogenic diet team members, neurologist Dr. Christopher Beatty; advanced practice provider Haley Sittner; clinical dietitian Marta Mazzanti; and nurse Deborah Rogers discuss how the diet works and how the team sets families up for success on the ketogenic diet. Read full post »

A decade ago, the late Seattle Children’s surgeon, Dr. Richard Grady, began traveling to India for a special mission — to provide urgent surgical care to children born with a rare and complex disorder called bladder exstrophy (BE).

Grady’s dedication to helping under-resourced children in India led to the development of a unique international collaborative that aimed to alleviate the global burden of this surgically treatable disease, as documented in a recent article published in JAMA Surgery.

Dr. Paul Merguerian, division chief of urology at Seattle Children’s, who is helping to carry on Grady’s inspirational work, recalls his colleague’s passionate commitment to care for children not only in the Pacific Northwest region, but in a country located more than 7,000 miles across the globe.

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John Madden, now 22 years old, has referred to his stay as a teenager in the Seattle Children’s Psychiatric and Behavioral Medicine Unit as the 10 most important days of his life.

When John Madden was 16 years old, the growing stress from his demanding academic schedule became a catalyst for larger issues.

Madden had withdrawn from friends and family. His misuse of prescription medication and use of illicit drugs to cope with the stress further aggravated undiagnosed mental conditions. Bouts of depression and mania sometimes left him sleepless for days with little control over his thoughts and actions.

Madden recognized he needed help, but he was not relieved when he was admitted to the Seattle Children’s Psychiatry and Behavioral Medicine Unit (PBMU).

“I had this Hollywood view of treatment and thought it was going to jump from talking to being restraint-oriented, locked in a room and treated sub-human,” Madden said. “I wanted to avoid that stigma about what goes on in mental health hospitals.”

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It’s holiday time in the Louden household. However, this year is unlike any other. For the first time in 11 years, 17-year-old Amber Louden will be able to join her family at the Thanksgiving table and indulge in some of her favorite dishes pain-free.

“I remember Thanksgiving two years ago; I ate so much food that I ended up in the hospital because of the horrible pain I was in,” said Amber. “Last year, I didn’t even get a chance to sit at the dinner table because I spent the holiday in the hospital where I stayed for 12 days.”

Amber’s decade-long battle with chronic pancreatitis prevented her from partaking in cherished holiday traditions.

It may be surprising that these traditions and the root of Amber’s struggle with pancreatitis share one common factor — and that happens to be family.

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Lillee Haynes, 4, surrounded by her three older brothers.

When 4-year-old Lillee Haynes runs through the doors of Seattle Children’s South Clinic for her speech therapy appointment and heads straight for a table covered in crayons, it’s hard to imagine that nearly two years ago she faced hundreds of epileptic seizures each day.

“Her seizures happened so often that I installed a camera above her bed to record any she had at night,” said Aimee Haynes, Lillee’s mom. “One night the camera recorded 200 movements. I was shocked to see how many seizures disrupted her sleep.”

Lillee’s brain didn’t rest until she underwent not one, but two neurosurgeries at Seattle Children’s to remove the diseased area of her left brain, allowing her healthy brain to grow and develop.

“You could say Lillee is most definitely right-brain dominant,” laughed Haynes. “That might explain why she has such a spicy personality.” Read full post »

Kaitlyn and Ryan Wyckoff travel from their hometown of Wasilla, Alaska, to Seattle Children’s so Dr. Sihoun Hahn (center) can monitor and treat them for Wilson disease — a rare genetic disorder.

For the first 15 years of his life, Ryan Wyckoff appeared to be a perfectly healthy, active teenager, living with his family in Wasilla, Alaska.

But during New Year’s weekend in 2009, Ryan began to feel seriously ill. He was lethargic and had a high fever that could not be controlled by acetaminophen.

Ryan was so sick he could barely make the trip to his family doctor. The doctor thought Ryan looked jaundiced and referred him to their local hospital, but providers there found nothing wrong so they sent him home.

Ryan’s symptoms worsened. He gained 15 pounds in just a couple days as fluid built up in his abdomen. Ryan’s mom, Lisa Wyckoff, remembered how her tall, slender son looked like he was pregnant.

An MRI revealed Ryan had cirrhosis — advanced scarring in his liver. His condition was life-threatening, so he was flown to Seattle Children’s by Medivac.

“It’s terrifying to have something seriously wrong with your son that no one can figure out,” said Lisa. “We felt so helpless.” Read full post »

Hudson received a portion of his uncle’s liver in July as part of a living donor liver transplant.

Jordan and Morgan Hill carry with them everywhere a custom-made coin inspired by their son’s liver transplant and the man who saved his life.

Morgan had the coin made weeks before his older brother, United States Army Special Operations Command Lt. Col. Trevor Hill, flew to Seattle from his home in North Carolina to donate part of his liver to his 8 ½-month-old nephew, Hudson.

“My brother saved our son’s life,” Morgan said. “Trevor has had what is called a challenge coin throughout his military career. It’s a sign of respect. It’s a symbol of someone’s unit and their life, and I wanted him to have one representing the incredible gift he gave us.” Read full post »

18-month-old Casey Lang defied incredible odds after an aggressive infection threatened his life.

Sara Chenault and her husband, Ed Lang, held their 15-month-old baby, Casey Lang, tightly as they sat outside the hospital on a warm sunny day in July. Casey giggled as he watched the wild rabbits hop through the grass. His eyes lit up and he squealed as he reached for the basketball his dad gently rolled toward him. Casey couldn’t seem happier, but his parents were beside themselves – they were saying goodbye to their baby boy.

“His situation was dire and we didn’t want Casey’s last few hours spent in a hospital room,” said Sara as she tearfully recalls that heartbreaking afternoon. “We wanted our last few hours together to be meaningful so we took Casey outside to let him just enjoy being a little boy.”

Casey and his family had already endured a rollercoaster experience throughout an unexpected 5-week hospital stay. They thought they were nearing the end of their time at the hospital and that Casey may finally be out of the woods. However, that morning everything changed. It became clear the worst was yet to come. Read full post »

The 2017 Family Choice Award recipients (clockwise): Dr. Jimmy Beck, Dr. Nina Natarajan, Dr. Tim Savage and Alicia Sevilla.

When families feel like their child’s care team is putting them first, they remember it.

At least that’s the case for more than 250 people who submitted nominations for Seattle Children’s 2017 Family Choice Awards. Each nomination came with a heart-touching story about a special staff or faculty member whose commitment to family-centered care sustained a family in the most difficult of circumstances.

The nominees were narrowed down to three winners by the Family Advisory Council, and Seattle Children’s pediatric residents also selected one of their peers for the Family Centered Care Award.

Read on to learn how this year’s award recipients – Dr. Jimmy Beck, Dr. Nina Natarajan, Alicia Sevilla and Dr. Tim Savage – make a difference in patient’s lives every day. Read full post »