Bear Brother, 1, underwent emergency spine surgery when he was diagnosed with a neurological condition known as a Chiari malformation.
Instead of picking up balloons and cupcakes, Lisa Hannigan and Robert Brother found themselves waiting in the Pediatric Intensive Care Unit (PICU) at Seattle Children’s one day before their son’s first birthday. In less than 36 hours, they had watched as their perfectly healthy son, Bear Brother, lost use of his arms and hands before he was rushed into emergency spine surgery for a neurological condition known as a Chiari malformation.
“It all happened so quickly,” said Hannigan. “After Bear’s daycare called me at work, we got to the Toppenish emergency center around 10 a.m. First thing the next morning he was going into surgery at Seattle Children’s.” Read full post »
Emily Talbot, 17, shares her story about her lifelong battle with a rare brain disease and how she has overcome the physical and mental health challenges caused by the condition through writing and performing music.
Although I look like any other 17-year-old, people don’t know that I live in pain 24 hours a day.
Since the age of 7, I have had 14 brain surgeries, 12 back surgeries and 6 stomach surgeries. I can’t begin to count how many spinal taps I’ve had.
Dominic Donati, then 9, eating for the first time six days after he suffered multiple strokes.
Sometimes it is the simplest of moments that can bring a family with a child in the hospital the most hope. For Tony and Laurie Donati, such a moment occurred when a neurologist at Seattle Children’s Neurosciences Center handed their son Dominic Donati a pen and paper and asked him to write a sentence only days after suffering multiple strokes.
Unable to speak at the time, Dominic, then 9, wrote, “Hi. My name is Dom.”
“It makes me cry every time I think about him writing this incredibly simple sentence,” Laurie, his mom, said. “Dominic’s stroke was the most awful thing that has ever happened to our family. I think everyone in the room felt excited because it was the first time we knew that he could still communicate with us.” Read full post »
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 »
New research from Seattle Children’s offers fresh insight into how the brain sets the pace of breathing.
Next time a workout has you winded, the inhibitory neurons in your brain may be to blame. This is according to new research from Seattle Children’s Research Institute that offers fresh insight into how the brain sets the pace of breathing.
In a study published in the journal Nature Communications, researchers used laser light to manipulate very specific classes of neurons responsible for breathing. The technique, known as optogenetics, helps scientists isolate neurons in the brain to study their function.
When stimulated in the lab, the researchers found excitatory neurons – the brain’s go signal – actually slow breathing, while inhibitory neurons – the brain’s stop signal – intervene to make breathing more rapid. In addition to explaining how the brain adapts breathing in response to everyday cues, the finding could lead to more precise treatments for neurological conditions that frequently involve breathing abnormalities. Read full post »
New research suggests inhibiting one group of neurons’ activity may prove to be a highly effective treatment for reducing relapse in recovering addicts.
A new study published by researchers from Seattle Children’s Research Institute reveals how neurons in the brain fuel drug-seeking behavior following compulsive drug use. Their findings, published online in Addiction Biology, suggest inhibiting one group of neurons’ activity may prove to be a highly effective treatment for reducing relapse in recovering addicts.
While the science of addiction is beginning to show how pathological drug use causes the brain’s “go” pathway to become overactive, little is known about what renders some individuals vulnerable to developing addiction and what protects others against it. There are also few effective treatments available to people who develop a drug addiction, or the approximately 90% of individuals who relapse following addiction treatment.
Dr. Susan Ferguson, a principal investigator in the Center for Integrative Brain Research at Seattle Children’s and senior author on the study, describes how her team used an experimental approach called chemogenetic inhibition to probe the relationship between brain activity and behavior in drug addiction. Read full post »
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 »
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.
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.
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 »
