Genetic testing helped diagnose Nolan Wood, 3, with KCNQ3 epilepsy.
Even though Nolan Wood hadn’t experienced a seizure in more than two years, his parents still had questions about their son’s future.
“We wondered if there were others out there that have what Nolan has,” said Emily Wood, Nolan’s mom. “If so, what does their life look like?”
The Woods’ search for answers began when Nolan, 3, was diagnosed with infantile spasms and regression of his motor skills when he was 6 months old. Before receiving seizure medications, Nolan had hundreds of daily subtle, reflex-like seizures. Due to the regression of his motor skills, he had stopped rolling over, smiling and crying. A condition known as cortical visual impairment had also rendered him legally blind. Read full post »
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 »
Seattle Children’s researchers consulted with the Northwest Junior Football League before moving ahead with a CDC-funded program addressing safety and concussion awareness in youth sports. Photo courtesy of Brian Bodine Photography/NJFL
Seattle Children’s researchers will launch an innovative program in early 2018 aimed at shifting the culture of safety in youth sports and building concussion awareness during competitive play.
The program, called One Team, emphasizes community engagement in conducting brief pre-game safety huddles involving coaches, officials, parents and athletes, with a goal of addressing both sportsmanship and the importance of removing an athlete from play if they potentially have a concussion.
Dr. Sara Chrisman and Dr. Emily Kroshus, both members of the Seattle Pediatric Concussion Research Collaborative and Seattle Children’s Center for Childhood Health, Behavior and Development, designed the program.
“We want to change how children, parents and coaches relate to injuries, and reinforce a line in athlete safety that shouldn’t be crossed, even in a competitive atmosphere,” Chrisman said.
On Thursday nights this summer, 7-year-old Arabelle Laddusaw is saddling up alongside other children and teens to compete in the Tomorrow’s Rodeo Champions’ summer rodeo series in her hometown of Billings, Montana. As she sits up straight and grips the reins of her horse in anticipation of the chute opening, her cerebral palsy is the last thing slowing down the thrill of events such as barrel racing, pole bending and the crowd favorite, goat tail tying.
However, the prospect of being able to sit naturally on a horse wasn’t always a future possibility for Arabelle who was diagnosed at birth with cerebral palsy, a neurological condition that affects muscle movement and limits mobility.
As a toddler, the muscles in Arabelle’s legs were so tightly wound they would scissor – one leg twisting over the other – making it difficult for her to stand upright or simply straighten her legs out in front of her when sitting.
“With her, it was challenging because she required constant assistance,” said Arabelle’s mother, Christine Laddusaw. “She wasn’t just a normal child that you could put down and let play.” Read full post »
From his appearance alone, 3-year-old Hamilton McNamee looks like a typical kid. He is rambunctious and playful with strawberry blonde hair and a mischievous smile.
As he climbs on the tables and chairs in Starbucks at Seattle Children’s Hospital, his mother Claire casually states, “He’s going to wander around a little. It’s fine.”
What’s different about Hammie, as his family affectionately refers to him, is that he has a condition known as tuberous sclerosis complex (TSC), a rare genetic disease that causes tumors to grow in various parts of the body, including the brain and other vital organs. Though the tumors are benign (which means they aren’t cancerous), they impact a child’s development in a variety of ways depending on where they grow and how big they get.
At age 2, Hammie experienced some seizure-like behavior after a bout with hand, foot and mouth disease. His primary care provider referred Hammie to Seattle Children’s First Seizure Clinic where tests revealed that he had growths in his brain and he was diagnosed with TSC.
Twins Hendrix (left) and Harper were diagnosed with SMA Type II in summer 2015. They have made tremendous progress since beginning a breakthrough treatment in February 2017 at Seattle Children’s.
Spinal Muscular Atrophy (SMA) had progressively taken away the strength of 3-year-old twin brothers Harper and Hendrix to lift a cup of water, crawl or even take a deep breath on their own. Without access to a breakthrough treatment for the incurable genetic condition, the regression of their motor skills was certain to continue, potentially to the point that it was life-threatening.
So moments like the one that unfolded between Harper and Hendrix in a Seattle Children’s recovery room shortly after their fourth infusion of the new drug, Spinraza, represented much more than brotherly play to their parents, Crystal and Noe Ramos.
Harper raised his right arm high above his head and paused briefly before snapping it down in front of him as he released a makeshift ball of medical tape and paper. The object bounced and then skidded on the floor before it came to rest near Hendrix, who gave it a casual glance before returning his attention to the iPad in his lap he gripped firmly with his fingers.
Priscilla, 7, has always been encouraged to try new things. Although she was diagnosed with cerebral palsy at 1 years old, she hasn’t let it slow her down. She lives by the motto: The sky is the limit.
Throughout 7-year-old Priscilla Campos’ life, she’s been empowered by her parents to try new things. Her mother, Shannon Cruz, says their family lives by a simple motto: The sky is the limit.
It’s a lesson Priscilla has taken to heart. She’s always believed she could do anything, and she’s proven she can.
“She reaches for the sky,” said Ruben Campos, Priscilla’s father. “There are no limitations. I always tell her she can do anything, and then she does. She’s incredible.” Read full post »
Carmen Einmo, 16, suffered a concussion after falling off a horse. A new study shows that incorporating psychological care and coordinated care improves outcomes for adolescents with persistent concussion symptoms.
Concussions can create a host of symptoms—headache, dizziness, moodiness, upset stomach and other issues. In most cases, those symptoms eventually dissipate, but about 15% of young people who get concussions struggle with persistent symptoms despite seeing doctors and receiving medical care. The ongoing symptoms interfere with school, social life and physical activity.
Researchers at Seattle Children’s Research Institute published a study today in the journal Pediatrics showing a new intervention for adolescents with persistent post-concussive symptoms that improved health and wellness outcomes significantly. The approach combines cognitive behavioral therapy and coordinated care among providers, schools, patients and families.
“We were pleased to find that using an approach that adds a psychological care component to treating concussions and providing coordination of care in areas of the patient’s life significantly improved outcomes,” said Dr. Cari McCarty, a psychologist and researcher at Seattle Children’s Research Institute who led the study. “This new approach aims to improve the quality of life for patients who were otherwise left to deal with unrelenting concussion symptoms.” Read full post »
Dr. Philippe Coulon thinks electrical signals directly exchanged between brain cells may hold promise as a potential target for absence epilepsy treatments.
A child with absence epilepsy may be in the middle of doing something—she could be dancing, studying, talking—when all of a sudden she stares off into space for a few moments. Then, as quickly as she drifted off, the child snaps back into whatever she was doing, unaware that the episode occurred.
That brief moment of disconnect from reality is called an absence seizure, and according to the Epilepsy Society, childhood absence epilepsy accounts for 2-8% of all epilepsy diagnoses. Most cases of childhood absence epilepsy end after puberty, but about 30% of cases continue into adulthood or lead to other forms of epilepsy, says Dr. Philippe Coulon, a neuroscientist at Seattle Children’s Research Institute.
“Some kids can have hundreds of these brief seizures a day,” said Coulon. “I can only imagine how hard it is for them to function and have a normal childhood.”
In a study published in the Journal of Physiology, Coulon and his colleagues suggest that electrical signals directly exchanged between brain cells may hold promise as a potential target for absence epilepsy treatments. Read full post »
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