Authors: Casey Egan
After a family trip to Finland last summer, Jasmine’s family became increasingly concerned about some unusual symptoms she was experiencing.
What started as occasional numbness in her lip or left side of her face last spring had progressed to twitching, which the family later learned were increasingly strong seizures.
Her family had been proactive in seeking help for Jasmine, who is now 13 years old. In Finland, they took her to a specialist, had lab tests performed and tried to adjust her diet and vitamin intake. They also took her to a chiropractor when she returned to their home in Alaska, but the symptoms did not let up.
Then, in September 2022, Jasmine’s father, Erik, found her having the most intense and longest seizure he had ever seen.
“Up to this point, she had never lost any of her awareness of what was going on,” Erik said. “That time, her eyes were open but it was like nobody’s home.”
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Authors: Colleen Steelquist
It’s been 12 years, but Brandy Epling still chokes up at the traumatic memory of her firstborn’s birth.
It was a difficult pregnancy, with preterm labor forcing a 33-day stay at a southwest Washington hospital for the mom-to-be, followed by months of bedrest. Ultrasounds revealed the baby’s brain was a bit bigger on the left side, but the local fetal medicine doctor wasn’t overly concerned.
Induced at 38 weeks, Brandy labored for 22 hours until Emree finally emerged.
“It was probably the scariest moment of my life,” Brandy said. “When she came out, her head was grossly swollen. There was this ring of fluid around her head. Her left eye was completely enlarged and she was not breathing normally.”
It took hours to stabilize the critically ill infant, who also had fluid around her heart.
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Authors: Casey Egan
When Jiana was born in August 2021, she appeared to be a typical, healthy newborn baby.
“I still remember her pediatrician called her a textbook baby,” recalled Latika, Jiana’s mom.
Unfortunately, that normalcy was short lived. On her first day home from the hospital, Jiana’s parents noticed their daughter was twitching.
“We were first-time parents and thought it was colic or gas,” said Kunal, Jiana’s dad. “We didn’t know what to expect.”
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Authors: Casey Egan
Dr. Samuel Browd, surgical director and neurosurgeon for the Cerebral Palsy and Tone Management Programs at Seattle Children’s
March is Cerebral Palsy Awareness Month. Cerebral palsy is a condition that causes differences in how someone moves and controls their muscles. The differences are caused by an injury to a child’s developing brain. The brain injury can happen before, during or after birth. The injury does not change (it is non-progressive), but the effects can change over time and worsen as children grow. The condition affects a child’s strength, muscle tone and motor control.
According to the U.S. Centers for Disease Control and Prevention, cerebral palsy is the most common motor disability of childhood and approximately 1 in 345 children have been identified with the disorder.
The Cerebral Palsy Program at Seattle Children’s features a team of providers, surgeons and therapists with expertise and experience treating children, teens and young adults with cerebral palsy.
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Authors: Anna Altavas
Update – February 27, 2020: It is our pleasure to share that the individual featured in this story now uses she/her pronouns and goes by the name Iris. She continues to be seen at Seattle Children’s Gender Clinic and advocate for gender affirming healthcare.
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In celebration of LGBTQ+ Pride Month, On the Pulse shares a story about 17-year-old Torin, a Seattle Children’s patient who battled cancer. After years of treatment and rehabilitation, Torin is now standing strong, yet continues to face challenges that come with identifying as gender non-binary. Torin talks about their struggle and overcoming oppression by not being afraid to express their authentic self.
From as early as Torin could remember, they used writing as a way of expressing emotion.
“I knew I loved writing when I wrote my first series of stories in elementary school,” Torin said. “They were about the adventures of ‘Pencil Man,’ a superhero who had the power to draw and erase things.”
Although Torin finds the plot of the story silly now, it serves as a poignant theme in their life.
Each individual should have the power to create their own story and be true to themself.
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Authors: Casey Egan
Caitlin with Dr. Stephanie Randle
A cutting-edge procedure for epilepsy at Seattle Children’s, known as responsive neurostimulation (RNS), is offering hope and seizure reduction relief to some patients who are still looking for solutions after exploring other treatment options.
With RNS, a battery-powered device is placed in a patient’s skull to reduce seizures. A neurosurgeon connects thin wires from the device to one or two parts of the brain where a child’s seizures start. When the device senses that a seizure may be starting, it sends a signal to stop it.
Seattle Children’s is one of only a handful of centers across the country to offer this device and the only one in the northwestern U.S. to use this device on a child.
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Authors: Seattle Children's Press Team
Ellie Musgrave, who dreams of becoming a professional race car driver one day, had emergency surgery at Seattle Children’s to remove a brain tumor at a young age.
Ellie Musgrave found her calling when she was 4 years old. Her father took her to the racetrack and a dream sparked. She surprised her dad by saying, “I want to do that.”
Much like the electrical charge that brings a car to life, the draw to racing happened in an instant and throttled her into motion. It was in the sound of engines, the whooshing of the cars as they sped by on the track.
That’s when she knew she wanted to be a race car driver.
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Authors: Kathryn Mueller
A few weeks after Ryder Gordon’s first surgery at Seattle Children’s, Thomas Gordon went to the tattoo shop and got an exact replica of his son’s scar on his neck and chest.
When Ryder Gordon was 2 years old, he underwent his first surgery. It took 12 hours and saved his life.
Thomas Gordon and his wife, Magi, vividly remember the day they handed over their son to surgeons at Seattle Children’s.
“It was gut-wrenching,” said Magi. “You want more than anything to switch places with your child.”
Ryder was the couple’s first child and they never imagined being thrust into a world of comprehensive medical care. But there they were, among the bright lights of the surgical suites and the bustling halls of the hospital.
“Going through a medical journey really humbles you,” added Magi. “Being at Seattle Children’s brought us a sense of comfort. I felt like they cared about us, not just as patients, but as people.”
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Authors: Madison Joseph
Just in time for Autism Acceptance Month, the Seattle Children’s Alyssa Burnett Adult Life Center (ABC), which offers lifelong learning for people 18+ with autism spectrum disorder (ASD) and other developmental disabilities, reopened its expanded doors in late March, rolling out in-person classes for the first time since the COVID pandemic began.
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Authors: Casey Egan
Epilepsy can be very difficult to treat – and some families explore a range of options seeking relief from seizures for a child with epilepsy looking for a solution. For 14-year-old Taylor Johnson, a procedure known as deep brain stimulation (DBS) resulted in her experiencing a completely new life and the significant seizure relief she and her family have been trying to find.
In deep brain stimulation, a small battery-powered device sends low-level electrical signals through the brain. The device is similar to a pacemaker in that it uses electrical pulses to help regulate brain function. It can be programmed remotely to help regulate brain function and reduce seizures.
During surgery, a neurosurgeon places two thin electrical wires into deep brain tissue. The wires are connected to a small battery that can be controlled remotely to stimulate the area of the brain called the thalamus. The thalamus is the central point for relaying signals to other parts of the brain. Read full post »
