On the Pulse

When Sam Duenwald, 18, was in seventh grade, he got sick and had to miss a couple of weeks of school.

However, a couple of weeks of missed school turned into three, then four, then five.

“It became a vicious cycle,” Sam said. “I was getting really anxious about going back to school because I knew I had missed a ton of homework and that was causing my grades to drop, so I decided to avoid going to school altogether. This of course spiraled into missing even more homework, making my grades suffer further.”

Naturally, the situation caused tension between Sam and his parents.

“There was a lot of stress at home, and I was fighting with my parents all the time,” Sam said. “They knew I needed help.”

Sam’s anxiety became so severe that his parents took him to see a psychiatrist at Seattle Children’s midway through seventh grade. He was prescribed anxiety medication, which helped Sam finish up the school year.

“Over the summer, I kept telling myself, ‘I need to go back to school regularly; I’m going to be in eighth grade and everything is going to be great,’” Sam said.

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The parasite that causes malaria waits in the salivary glands of the mosquito until it has the opportunity to move to a human host. New research exploring this stage of the parasite offers findings that could help identify new strategies to protect against malaria. Photo: Getty Images.

Within seconds after an infected mosquito bites, the malaria parasite navigates the host skin and blood vessels to invade the liver, where it will stay embedded until thousands of infected cells burst into the bloodstream, launching malaria’s deadly blood-stage infection.

Now, for the first time, a team from Seattle Children’s Research Institute describes how malaria Plasmodium parasites prepare for this journey as they lie in waiting in the mosquito’s salivary glands. Researchers say this knowledge may help identify new strategies to block transmission of the parasite – a critically important step needed for the eradication of malaria, a disease that continues to sicken over 300 million people and kill an estimated 435,000 people worldwide every year. Read full post »

Isabelle Zoerb, 13, has a rare genetic disorder called primary ciliary dyskinesia (PCD).

Like a typical 13-year-old, Isabelle Zoerb plays volleyball and tap dances. She also regularly uses an inhaler, takes antibiotics to minimize lung inflammation and wears a therapy vest that vibrates to help clear her lungs. A device in her chest provides intravenous medication when needed.

This is because Isabelle has primary ciliary dyskinesia (PCD), a rare genetic condition. Cilia are tiny hair-like cells in airways that beat in a coordinated way that clear out germs, mucous and particulates like dust from the respiratory tract. In people with PCD, cilia do not beat properly, which prevents bacteria from clearing the lungs, sinuses, nose and ears.

When Caroline Zoerb adopted Isabelle from China as a toddler, Isabelle’s organs were reversed like a mirror image. She had been born with a hole in her heart and was constantly sick. Seeking answers, the family met Dr. Margaret Rosenfeld, an attending physician and researcher at Seattle Children’s, who thought she might have PCD based on her symptoms.

Seattle Children’s is the only PCD referral center in the Pacific Northwest, with patients coming from Wyoming, Idaho, Oregon, Alaska and Montana. Providers see patients for regular follow-ups to make sure their needs are being met and they are responding to their therapies.

“We always seem to make our way to Seattle Children’s because they have the expertise to help someone with such a rare disease,” Zoerb said. Read full post »

From day one, 21-year-old Sean Gallagher has been able to command a room. He jokes that it’s because he has a flair for the dramatic; it could also be because of his bright and infectious personality.

Sean was born with a facial difference, and his medical journey has been long and complex. MaryJo Gallagher and her husband David knew their son would be born with a small jaw, but the extent of Sean’s condition was beyond what they had envisioned. Immediately after the delivery, Sean was whisked away by a frenzied team of doctors and nurses.

The next couple days were a blur of emotions as the couple grappled with their son’s condition and what it meant for his development. They had many questions, but not nearly enough answers.

Dr. Michael Cunningham, division chief and medical director of Seattle Children’s Craniofacial Center, said he’ll never forget the first time he met Sean’s family. Sean was only 2 days old at the time. Cunningham went to visit them at the hospital where Sean was delivered.

“I was standing across the bed talking to Sean’s mom and said, ‘Everything is going to be okay,’” Cunningham said.

MaryJo said she’ll never forget that day either. She said it was like a physical weight had been lifted off their shoulders. They felt hopeful.

“He’s a family hero,” MaryJo said. “He explained to us about Sean’s condition. He knew right away what it was. We were so appreciative of him reassuring us. This is not the road we would have chosen for our little boy, but we are glad we are on it together.” Read full post »

Seattle Children’s will embark on a groundbreaking clinical trial that will potentially transform treatment methods for children with relapsed acute pediatric leukemia.

In collaboration with The Leukemia & Lymphoma Society (LLS), Dr. Todd Cooper, an oncologist and director of the Seattle Children’s High-Risk Leukemia Program, is part of a team leading the effort to launch a global precision medicine master clinical trial called the LLS Pediatric Acute Leukemia (PedAL) Initiative. The goal of the trial, which is part of The LLS Children’s Initiative: Cures and Care for Children, is to test multiple targeted therapies simultaneously at up to 200 clinical sites, including Seattle Children’s, worldwide.

Cooper, the Clinical Trial Lead, will oversee the master screening trial where children with newly diagnosed and relapsed acute leukemia can choose to have their clinical and biologic information included in an international database. This database will serve many purposes, including helping to determine an individual child’s eligibility for a number of targeted clinical trials. The data will also be used to uncover new targets for therapy and as a rich source for groundbreaking discoveries.

On the Pulse sat down with Cooper to discuss the specifics of the trial and how it will possibly revolutionize the types of cancer treatments available for children.

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In an episode of the popular TV show Big Little Lies, a character’s young daughter has an anxiety attack, prompted by worries about climate change. Though this may seem drastic, Dr. Kendra Read, attending psychologist and director of anxiety programs with Seattle Children’s Psychiatry and Behavioral Medicine team, is having many conversations with families about how to cope with distressing news, such as mass shootings, crime, global politics and natural disasters.

“It’s common for kids to be worried about events that might potentially harm them or their loved ones,” Read said. “Worrying is normal and a typical part of life, but I tend to talk to children whose anxiety over current events impacts their daily functioning. They exaggerate the likelihood of bad things happening and underestimate their ability to cope with things.”

The key is helping kids cope with the worry about these events happening, even though the likelihood is small. With school back in session, Read offers advice to families whose children might experience heightened anxiety after a frightening news event.

“We want to bolster kids’ coping abilities and teach them how they can help themselves,” Read said. Read full post »

With school back in session, families are juggling classes, homework and after-school activities. Making sure kids are up-to-date on vaccinations and prepared for the upcoming flu season is also important.

“Immunizations are our chance to prevent infections before they happen and keep our children healthy,” said Dr. Matthew Kronman, a pediatrician and associate professor of pediatric infectious diseases at Seattle Children’s. “Because children are around so many other kids at school, there is a high chance for passing infectious diseases from one child to the next.”

To make it easier for busy families, On the Pulse asked Kronman what parents should know about back-to-school vaccines, including recommendations for the 2019-20 flu season and information about the measles, mumps and rubella (MMR) vaccine, which he noted is especially important after this year’s measles outbreak. Read full post »

Grace Blanchard was just three weeks away from graduating from college when she began feeling like something was off.

“It started with my handwriting,” Blanchard said. “I had always felt like I had good handwriting, so it was strange that it all of a sudden became messy, slanted and unreadable.”

Then there was the slurred speech and dizziness.

“At first I thought I had vertigo,” she said, “so I decided to see a neurologist to get an MRI.”

Once the results of the MRI scan were in, Blanchard received a call.

“They asked me to come into the clinic as quickly as possible, and that I should bring support,” she said. “They knew that after hearing, ‘you have a brain tumor the size of a golf ball on your cerebellum,’ I wouldn’t be able to listen to anything else.”

The following day, Blanchard flew from California, where she had been going to school, to Seattle, her hometown, for surgery to remove the tumor.

“I decided Seattle would be the best option, not only because I wanted to be with my family,” she said, “but also because of the fact that Seattle has the best hospitals for cancer treatment.”

Within 24 hours of flying into Seattle, Blanchard went to Seattle Children’s to get her tumor surgically removed.

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Daniel Sokoloff and his mom, Lara Sokoloff, photographed here when Daniel was younger, were one of 100 families who contributed to a study aimed at understanding common birth defects of the brain.

In the largest genetic study of the most common birth defects of the brain diagnosed during pregnancy, researchers from Seattle Children’s Research Institute say their findings evolve our understanding of brain development. The findings will also change the information given to expecting parents when cerebellar malformations, such as Dandy-Walker malformation and cerebellar hypoplasia, are detected prenatally.

With funding support from the Dandy-Walker Alliance and the Philly Baer Foundation, the results gathered from 100 families provide the most accurate information to date about the genetic and non-genetic causes of birth defects involving the cerebellum. They will also help doctors counsel parents about their child’s prognosis after they’re born and their risk of having another child with the abnormality.

“For those who are pregnant, you certainly don’t want to have a problem with the baby, but if doctors detect a brain abnormality, you want accurate information about what that means,” said Dr. William Dobyns, the senior author on the paper published in the American Journal of Human Genetics and an investigator in the Center for Integrative Brain Research. “It’s the same after birth. If you have a child at risk for developmental challenges, it helps to know the cause and what’s going to happen. This study significantly advances our ability to answer those questions.” Read full post »

For Shameka Cornelius, Seattle Children’s Odessa Brown Children’s Clinic (OBCC) is more than just a community clinic. To her, OBCC is family.

The clinic provides medical, dental, mental health and nutrition services to all families, regardless of their ability to pay. It also offers a unique model of care that addresses the socioeconomic and environmental roots of illness.

Shameka Cornelius poses with her three children, Saymirah, Shayrielle and Sy’ier.

Since Cornelius was a little girl, OBCC has been her medical home. From dental visits to well-child check-ups, Cornelius has fond memories of the clinic. She remembers walking from her grandmother’s house just blocks away in Seattle’s Central District to go to clinic appointments. For her, it never felt like going to the doctor. She was always excited to see the smiling faces of her care team.

“I still remember the very first fish tanks they had,” Cornelius said as she laughed. “Those were my first fish. You get your tokens when you go to the dentist and pick out a book after getting your shots. They even had popsicles sometimes.”

Cornelius says above all else, it’s the people that have made OBCC so special to her.

“Everyone should experience that type of service and a clinic of home and togetherness,” Cornelius said. “They actually care at OBCC. Everybody there is really friendly. For me, I wanted my kids to experience the same care that I received. The same people have been there since I was young. You can tell it’s not just work for them; they actually have a passion to be there.” Read full post »