New research and treatments for epilepsy have come a long way in the last several years. In this Q&A, we talk with Dr. Edward “Rusty” Novotny, director of Seattle Children’s Epilepsy Program and professor of neurology and pediatrics at the University of Washington. As the director of one of the largest epilepsy programs in the nation and the program exclusively dedicated to pediatrics in the Northwest accredited level 4 by the National Association of Epilepsy Centers, Dr. Novotny answers questions about advances in epilepsy treatment.
As a high school freshman, Liesel Von Imhof had a dream of attending college at Harvard. She packed her schedule with challenging classes and participated in varsity sports such as cross-country running and cross-country skiing. She had occasional, debilitating headaches that sometimes caused her to miss school, but she blamed them on stress, dehydration or low blood sugar.
In July 2016, just before her senior year of high school, Liesel’s dream of Harvard was almost derailed when doctors found the reason for her headaches: a Ping-Pong ball-sized tumor in the middle of her brain.
At the urging of her doctors, Liesel, then age 17, and her parents traveled from their home in Anchorage, Alaska, to Seattle Children’s.
Thanks to the care she received here, the support of her family and friends, and her own determination, Liesel is graduating from Harvard this month with a degree in stem cell biology — her first step toward a career in medicine.
The Nadella Family Commits to a Hopeful and Brighter Future for all Children and Families, Supporting Advanced Precision Medicine Neurosciences and Mental and Behavioral Health Care
Zain Nadella is 24 years old. When his family talks about him, they light up. They speak about his eclectic taste in music, his warm sunny smile, and the love he has for his family. Zain has had to struggle against tremendous adversity due to his medical condition. His journey has shaped the Nadella family’s story to one of resilience, empathy, and determination to realize the promise of a brighter future for children with neurological conditions.
Hours after Zain was born, he was rushed to Seattle Children’s Neonatal Intensive Care Unit (NICU). Born with cerebral palsy, he fought for survival in those first few months and required life-saving treatment. His parents, Satya and Anu Nadella, put their trust in the doctors and care providers at Seattle Children’s. Zain’s birth story was not what they had imagined. He was born weighing just 3 pounds and suffered asphyxiation in utero. When they found themselves surrounded by beeping machines and an army of healthcare providers, their focus shifted.
“Like our baby, I too was in survival mode,” Anu said. “I was focused on taking one day at a time.”
Today, Zain still faces many challenges. Zain’s health issues have only intensified as he has grown. He is legally blind and is affected by spastic quadriplegia and has required complex care at Seattle Children’s. The Nadella family likens the hospital to a second home. Read full post »
While the human brain has over 400 miles of total vasculature, little is known about the tiny capillaries that make up much of this intricate labyrinth of blood vessels critical for delivering oxygenated blood and nutrients to billions of brain cells.
According to Dr. Andy Shih, a principal investigator in the Center for Developmental Biology and Regenerative Medicine at Seattle Children’s Research Institute, understanding how this vast network regulates blood flow in the brain could hold the key to new treatments for neonatal and childhood neurologic conditions, such as stroke and hypoxia, and issues of aging like dementia and Alzheimer’s disease.
“Insufficient blood flow contributes to many of the common neurologic problems seen in children and adults,” he said. “Yet, because we can’t see the capillaries, which measure about 1/10th the thickness of hair, with in vivo clinical imaging techniques, determining how blood travels through this densely packed bed of vessels has remained elusive.”
Wanting to get a closer look, Shih and fellow scientists, Dr. Andree-Anne Berthiaume and Dr. David Hartmann, applied special techniques called two-photon imaging and optogenetics to isolate and study brain capillaries in animal models. Their findings published today in Nature Neuroscience describe the dynamics that govern capillary blood flow in the brain and have broad implications for future avenues of brain research.
Read full post »
When 11-year-old, Giorgia Graham, told her parents her cheek was going sporadically numb, they thought it was because she banged her face playing tag.
But when the numbness kept coming back, her parents realized it was something more serious. They discovered Giorgia was having seizures when she experienced a grand mal seizure sleeping one night with her mom while her dad was traveling out of the country. Though the seizures remained mostly isolated to Giorgia’s face, some, like this one, took over her entire body and caused her to lose consciousness. At worst, she was having more than 60 seizures a day.
“When medications didn’t stop the seizures, Giorgia’s mom, Christina, and I knew brain surgery was our only hope,” said Nick Graham, Giorgia’s dad. “That’s when we came to Seattle Children’s for a second opinion to see if surgery was possible.” Read full post »
Tuesdays are 2-year-old Malachi Stohr’s favorite days. Every Tuesday, rain or shine, Whitney Stohr and Malachi bundle up and wave to the garbage men as they empty the garbage bins at the end of the driveway. Malachi and Whitney then take a walk around the neighborhood, following the big green truck along its route. Malachi loves garbage day, and so when Seattle Children’s found out, they got in touch with Waste Management to plan a special surprise.
“So much of Malachi’s life is scheduled around his medical needs,” Stohr said. “He spends many days in the hospital, in clinics, in therapy. We’re eternally grateful to have that level of care available to us. We are thankful to have such ready access to the services at Seattle Children’s and in our local community. But, at the end of the day, Malachi is just a typical toddler. He loves big trucks and watching the trash bins go up and down, up and down.” Read full post »
On May 7, 2018, Whitney Stohr slumped to the ground in the corner of her son’s room in Seattle Children’s Pediatric Intensive Care Unit.
Her son Malachi, who was born with a severe form of spina bifida, had undergone a tracheostomy days before. When he woke up after the procedure, his pain was so intense his body went into shock.
That night, Stohr remembers hearing beeps and alarms blaring in their room. Malachi wasn’t getting enough oxygen and his heart rate was dropping. Providers rushed in to perform CPR.
“I just crumbled to the floor,” Stohr remembers. “I was scared he wasn’t going to make it.”
That’s when a provider from the Medically Complex Care team knelt beside Stohr.
“She looked me in the eye and said, ‘It’s okay Whitney. We got him. He’s stable. He’s going to be okay.’ She told me that night that I needed to be strong for Malachi, and I haven’t stopped yet.”
The Stohrs have come a long way since then, and while Stohr has feared for her son’s life countless times, Seattle Children’s workforce members have been like a second family during the most challenging moments. Read full post »
It’s been over three years since Maxford Brown woke up one morning not feeling well. Neither Maxford nor his family had any idea that it would mark the beginning of a life-changing journey with a rare, but serious neurological condition called acute flaccid myelitis, or AFM.
“I suggested it might help for him to lay down. When I went to wake him up, he had lost all ability to move on his own,” remembered his mom.
In a state of shock, Tracy Brown called their pediatrician to describe what had happened to her son.
“I remember asking our doctor if we should make an appointment,” she said. “That’s when they told me we needed to get Maxford to Seattle Children’s Emergency Department right away.” Read full post »
Grace Carney was 16 years old when she first began falling. Before long, she was falling every day. It got so bad that she had to rely on other people — family members at home and aides at school — to help her walk.
For Grace, this was the latest in a lifetime of medical setbacks, many of which stem from neurofibromatosis type one (NF1), a genetic disorder that causes tumors to grow all over the body, including under the skin and on the nerves.
To improve Grace’s ability to walk, a doctor in Spokane recommended a major orthopedic surgery. But as the Carneys prepared for that surgery, an MRI result flipped everything upside down and brought them to Seattle Children’s, where Grace received an innovative medical treatment that changed her life and could do the same for countless others with NF1. Read full post »
“You Don’t Have to Know Yourself Right Away”: Iris Shares Her Journey of Self Discovery As a Transgender Woman
In honor of LGBTQ+ Pride Month, Seattle Children’s patient Iris shares her story as a self-identified transgender woman and offers advice on how you can support the mental health and well-being of other transgender youth.
In July, Lisa picked up her 17-year-old, who had been identifying as gender non-binary, from summer camp. When her teen got into the car, they had news.
“I want to change my name to Iris and I am going to use feminine pronouns from this point forward.”
Lisa remembers her light-hearted response. “I just said, ‘Okay. But you may have to give me a minute to adjust.’”
For Lisa, this was not a tremendous, earth-shifting announcement. It was just another opportunity to support her daughter’s journey of self-discovery.