On the Pulse

A New Approach to Caring for Kids with Tuberous Sclerosis Complex

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 »

Shedding Light on Mental Health Stigma and the Truth About Treatment

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Madden had withdrawn from friends and family.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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Asher Pens a Letter of Gratitude to the Doctor Who Cared for Him and His Dad

Asher was born with Robin sequence, which causes a smaller lower jaw and the tongue to be placed further back than normal. These features tend to block the baby’s airway.

The same day Kirstin and Chris King found out they were having a baby boy, they also received some unexpected news.

“We weren’t anticipating anything out of the usual,” said Kirstin. “But the look on the doctor’s face told us something was wrong.”

The ultrasound images revealed their son’s jaw was visibly stunted, which left the family with more questions than answers.

“I remember going home and thinking, ‘What just happened?’” said Kirstin.

Kirstin described the experience as a whirlwind. Read full post »

Discover the Seattle Children’s Stories You Might Have Missed in 2017

With 2018 in full effect, On the Pulse is taking a moment to hit rewind to share five stories that might have floated beneath the flurry of headlines in 2017.

We invite you to take a look back at some of last year’s stories that inspired us and gave us hope.

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

Courtesy of Amanda De Vos Photography

Amanda 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.

De Vos would learn that the photo she took of Julia would help to identify a rare eye cancer, retinoblastoma, that was stopped in its tracks with an innovative treatment at Seattle Children’s.

Read full post »

A Real-World Lab Gives Students Hands-on STEM Experience

From left to right: Puget Sound Skills Center BioMedical Research and Global Health program students Maryan Farah, Samantha Johnson and Lul Abdinoor. Offered in collaboration with Seattle Children’s Research Institute, the course is the first-of-its kind at a Washington state Career and Technical Education school.

On the day On the Pulse visited the BioMedical Research and Global Health program at Highline Public Schools’ Puget Sound Skills Center (PSSC), the students were preparing to extract DNA from plant specimens in order to learn about a process used by scientists for studying DNA.

Instructor, Dr. Noelle Machnicki, reviewed the protocol, including a detailed description of lysis – a process the students would be using to break open the cells – and then sent them to their benches to get started.

Machnicki, a biologist with a doctorate degree, skilled educator and a member of the Science Education Department at Seattle Children’s Research Institute, was immediately drawn to the opportunity to teach the first-of-its-kind yearlong program offered in a partnership between Seattle Children’s and the PSSC.

“The program intends to create a strong foundation in biological sciences for high school juniors and seniors through extensive hands-on laboratory experience and other educational and leadership opportunities,” said Machnicki. “It provides research training beyond what a student would get in a typical high school science class.” Read full post »

Top Seattle Children’s Blogs of 2017

As the countdown to 2018 begins, we can’t help but look back on all of the amazing stories from Seattle Children’s that inspired readers in 2017. With over 100 stories of hope, care and cures posted on our blog this year, here are the top seven most-read posts of 2017.

1. Novel Diet Therapy Helps Children With Crohn’s Disease and Ulcerative Colitis Reach Remission

Adelynne, with her mom here, was diagnosed with Crohn’s when she was 8 years old. With the help of a special diet, Adelynne has been in clinical remission for more than two years.

A first-of-its-kind-study led by Dr. David Suskind, a gastroenterologist at Seattle Children’s, published in the Journal of Clinical Gastroenterology, found a special diet called the specific carbohydrate diet (SCD) could bring pediatric patients with active Crohn’s and ulcerative colitis into clinical remission.

The findings support the use of SCD – a nutritionally balanced diet that removes grains, dairy, processed foods and sugars, except for honey – as a sole intervention to treat children with inflammatory bowel disease. Read full post »

Life-Saving Surgery Ensures Oliver is Home for the Holidays

Oliver bounced back from overwhelming odds with an amazing recovery. His family is now looking forward to its first Christmas with him.

Brandi Harrington seized the first opportunity she had to touch her newborn son minutes before he was taken by ambulance to Seattle Children’s Neonatal Intensive Care Unit (NICU). She and her husband, Tyler Harrington, were told Oliver had a 1% chance of surviving.

Propped up in a hospital bed following an emergency cesarean delivery seven weeks before her due date, Brandi saw Oliver for the first time. Tubes and wires connected all but one part of Oliver’s little, swollen body to machines that supported and monitored his breathing, heart rate and oxygen levels.

Read full post »

Keeping Tradition Alive

As friends and families gather together to observe winter holidays, many follow traditions as part of their celebrations. There are typical traditions, like lighting a menorah each night of Hanukkah, decorating a tree for Christmas, or making resolutions for the New Year. Some families have more unusual traditions, like having a dress-up theme for Christmas Eve or throwing a BBQ for winter solstice, the shortest day of the year. Some traditions instill faith, but whether faith-based or not, practicing tradition is a way to teach values, build relationships, foster a sense of belonging and create positive memories. These are all things that make a strong positive impact on the life of children.

On The Pulse asked Seattle Children’s Dr. Mollie Grow, pediatrician, and Dr. Tony Woodward, medical director of emergency medicine, to share their top winter holiday traditions. Read full post »

Helping Kids With Cleft Lip and Palate Thrive

Cleft lip and palate is the most common condition Seattle Children’s Craniofacial Center treats.

Finding out your child will be born with a cleft lip and palate can be unexpected and distressing for many families. Plagued with questions, parents may wonder if their child will be able to thrive, have speech issues, or what their smile will look like. Dr. Craig Birgfeld, a craniofacial plastic surgeon at Seattle Children’s, enjoys being able to ease a family’s anxiety. At Seattle Children’s, he knows these families are in good hands.

“When patients come to see us they become part of our family,” said Birgfeld. “To me, the best part of our job is seeing these kids grow up and be completely normal kids. It’s hard to remember them as a baby with a cleft. That’s the true test, and one of the reasons we do what we do.” Read full post »

Ciara and Kelly Rowland Spread Holiday Cheer at Seattle Children’s, Carol With Kids and Deliver Amazon Fires

Photo credit: West2East

Cheerful caroling could be heard through the halls of Seattle Children’s today thanks to two very special guests, Ciara and her friend Kelly Rowland. They surprised patients and families in the inpatient playroom with a holiday concert, accompanied by guitarist Barry Black. But that wasn’t the only surprise they had in store for kids at the hospital. The GRAMMY winners teamed up with Amazon and brought holiday cheer to patients and families in another very big way – with one of the largest Amazon deliveries of the year – a six-foot tall Amazon gift box filled with Amazon Fire HD 7s and Amazon Fire HD 8s for patients at Seattle Children’s.

“Caroling with the kids was the perfect way to brighten up the holidays at the hospital and surprising patients with gifts made it very special,” said Ciara. Read full post »