Jennifer Bevaart’s son William was diagnosed with Kawasaki disease in September, 2014.
In honor of National Kawasaki Disease Awareness Day, we are sharing the story of William, a 10-year-old boy who lives with the disease, and why Seattle Children’s, an international leader in Kawasaki disease research, is the best place for children like William to receive treatment.
In September, Jennifer Bevaart’s son William developed a fever that lasted for days. He was lethargic, had a rash on his chest and his eyes were bloodshot. Over the next two weeks, Bevaart took William to at least four different specialists, each of whom suggested a different diagnosis: a sinus infection, walking pneumonia, bronchitis, even scarlet fever. Each treatment failed to ease William’s symptoms. He went from an active, tae kwon do enthusiast to a weak boy who was too weak to walk even the short distance to the mailbox without lying down to rest.
“Call it mother’s intuition, but I just knew something was very wrong with my son,” Bevaart said. “I felt like I was watching him die.” Read full post »
Now that the halls have been decked and the most wonderful time of the year is over, Dr. Jim Hendricks, president of Seattle Children’s Research Institute, took down the holiday tinsel from his work station and spent a moment reflecting on the research institute’s greatest accomplishments of 2014.
There were so many exciting developments over the past year that it’s impossible to fit them all in one short list, but here are some outstanding achievements that come to mind.
- Our investigators had an incredibly successful year when it comes to funding, including government, nonprofit and industry sources. Our total funding increased from $76 million in fiscal year 2013 to nearly $92 million in fiscal year 2014, which represents a 21% increase. This success is a testament to the talent of our investigators considering that the competition for federal grants has increased steadily as the available federal funding has decreased. This funding will help us get closer to finding more treatments and cures for pediatric diseases.
- We continued our first T cell cancer immunotherapy clinical trial this year and opened enrollment for two additional trials. This ground-breaking therapy reprograms the body’s infection-fighting T cells to find and destroy cancer cells with minimal side effects. While our first trial, PLAT-01, continues treating patients with relapsed leukemia, a second trial treating leukemia patients with T cell immunotherapy has had great success thus far. Additionally, a new trial opened in November to treat neuroblastoma using immunotherapy.
Read full post »
As we head into the New Year, we’d like to reflect on some of the incredible clinical advancements of 2014 that show how our doctors have gone the extra mile for our patients.
In the Children’s HealthLink Special video above, watch how futuristic medicine has saved the lives of the littlest patients at Seattle Children’s. From 3D-printed heart models to liquid ventilation, doctors and families reveal the amazing benefits of innovative treatments that challenge the status quo. Read full post »
In honor of the New Year, we’re taking a look back at some of our most popular and memorable blog posts from 2014. Below is a list of our top 10 posts. Here’s to another great year of health news to come. Happy New Year!
Lung Liquid Similar to One Used in Movie “The Abyss” Saves Infant’s Life, Doctors Encourage FDA Approval of Clinical Trials
Two doctors at Seattle Children’s went the extra mile to save Tatiana, one of the sickest babies they’ve ever seen. They got FDA approval to use a long-forgotten drug and are now inspired to help make this drug available to save more lives.
Visit with Macklemore Helps 6-Year-Old Heart Patient Recover
AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore. Read full post »
Editor’s note: Dr. Dimitri Christakis, director of the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute, offers parents the following advice when choosing toys for their children during the holiday season and throughout the year.
In the midst of the holiday shopping season, parents are faced with a plethora of toy options for their children. They must decide between the latest and greatest tech gadgets and old favorites that they may remember playing with as a child. Here are a few key principles for parents to keep in mind when considering what’s best for your child’s development.
Interaction is key
No matter what toy your child plays with, the best way to foster their development is to be an active participant in their play. Try to give your children toys that encourage interaction with other children or adult caregivers. Toys should not be viewed as a tool to occupy your child while he or she is left alone, but instead should provide opportunities for them to play with others.
You have to like it too
Give your child toys that make both of you happy and you will be more likely to play together. Avoid games with flashing lights or loud noises if you find them annoying. Instead, select toys you would enjoy playing with, such as your favorite children’s book or that barn toy you remember fondly. Your child will appreciate playing with you and their social skills will benefit from the interaction. Read full post »
Sutton Piper, age 3
Sutton Piper, 3, was born with a metabolic disorder that made his muscles too weak for crawling, walking and talking. After being referred to Dr. Sihoun Hahn, a biochemical geneticist at Seattle Children’s, Sutton is bouncing on his mini-trampoline and chatting up a storm.
Sutton Piper came into the world on his own terms: nine days late.
At 6 months, he’d made little attempt at rolling over; at 9 months, he showed no interest in sitting up on his own; and, by his first birthday, he wasn’t even trying to crawl. Read full post »
Elise Pele had been in labor for hours awaiting the arrival of her baby girl, Tatiana, on the evening of Aug. 29. Elise remembers wanting desperately to hear her baby cry – a sign that everything was ok. But that cry never came. She saw Tatiana for only a few seconds before nurses rushed her to the neonatal intensive care unit (NICU) at a local hospital.
“I instantly knew something wasn’t right and I was terrified,” Elise said. “The doctors told me my baby wasn’t breathing right and had to be transferred to Seattle Children’s.”
Tatiana experienced meconium aspiration syndrome where she inhaled a mixture of meconium (stool) and amniotic fluid during labor due to stress, which obstructed and irritated her airways, leading her down a path where doctors thought she would likely die. Read full post »
Researchers at Seattle Children’s are constantly asking questions and investigating new treatments with the goal of improving care for our patients. Two investigators from Seattle Children’s Research Institute recently came together to determine the best therapy for children suffering from infantile hemangiomas.
A breakthrough treatment
Before she took propranolol, hemangioma tumors covered Shakira Locke’s face and neck – and blocked her esophagus and airway. After being treated at age 2, Shakira now breathes and eats normally.
Right after Lorene Locke gave birth to her daughter Shakira, she noticed what looked like a rash on the newborn’s face. Three weeks later, doctors found an abnormal clump of vessels, called an infantile hemangioma, growing out of control inside Shakira’s throat and on her neck, face and ear, blocking her airway and leaving her gasping for air.
While most hemangiomas go away on their own and don’t cause problems, children like Shakira need multiple surgeries and procedures to remove the growths. Dr. Jonathan Perkins, an otolaryngologist and an investigator at the Center for Clinical and Translational Research at Seattle Children’s Research Institute, has spent years studying hemangiomas in search of a less-invasive approach. When French researchers discovered that a blood pressure medicine called propranolol could shrink away hemangiomas, Perkins found the breakthrough he was waiting for. Read full post »
Children are at greatest risk for abusive head injuries between about 2 weeks and 4 months of age, when they cry the most and cannot always be soothed.
It’s well understood that head injuries are harmful to children, but just how serious are the effects?
A new study published in Pediatrics reports half of children who experience a severe abusive head trauma before the age of 5 will die before their 21st birthday. The study, led by Ted Miller of the Pacific Institute for Research and Evaluation, also reports the quality of life of children who survive severe head injuries is cut in half.
Dr. Kenneth Feldman, a primary care doctor at Seattle Children’s Hospital and former chair of the hospital’s Child Protection Program, was not surprised by the results of the study.
“These findings are in line with what we’ve experienced in clinical care,” said Feldman, who is also an investigator with the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute. “Abusive head injuries have devastating affects. We know that of the infants that survive these kinds of head injuries, about a third develop life-threatening neurological disorders, another third have moderate dysfunction and the remainder appear healthy, but may experience significant problems in school.” Read full post »
Researchers at Seattle Children’s are sharing their success thus far in treating leukemia using immunotherapy – a technology that uses the body’s own immune system to destroy cancer cells. While scientists are excited about progress of these clinical trials, no one is more grateful for this research than the families of the patients who have benefited from it.
A tiny girl, a tough decision
Greta Oberhofer with her parents Andy and Maggie and her sister Charlotte.
In March of this year, Andy and Maggie Oberhofer, of Portland, Ore., faced the most difficult dilemma of their lives. Their baby daughter, Greta, was dying. She had been diagnosed with acute lymphoblastic leukemia when she was just 3 months old and standard treatments were not working. Her family prepared for the worst.
“Greta had barely survived chemotherapy and a transplant,” Andy Oberhofer said. “We didn’t want her to suffer any more if she couldn’t be cured. We found ourselves considering end-of-life care for our 1-year-old daughter.”
But then, Greta’s family found hope. Greta qualified for a cancer immunotherapy trial at Seattle Children’s Hospital designed to treat leukemia patients who have relapsed after a transplant. This innovative technology reprograms the body’s T cells and reintroduces them into the immune system, where they hunt down and destroy cancer cells.
“Immunotherapy just made sense to us,” said Oberhofer. “We believed it could work.” Read full post »