Erik Twede was just 3 years old when he was diagnosed with Duchenne muscular dystrophy, a fatal genetic disorder that causes progressive muscle weakness.
The day doctors told Karen Twede her son Erik had Duchenne muscular dystrophy, she went straight home and searched for the mysterious illness in her medical dictionary. She read: “A progressive muscle disease in which there is gradual weakening and wasting of the muscles. There is no cure.”
“My breath caught in my throat,” Twede said. “It was a terrifying reality to accept.”
Thankfully, several clinical research studies being offered at Seattle Children’s Research Institute are giving hope to parents facing the same devastating diagnosis.
The studies, led by Dr. Susan Apkon, director, Seattle Children’s Department of Rehabilitation Medicine and an investigator in the research institute’s Center for Clinical and Translational Research, offer promise to better treat, or even cure, Duchenne, through the use of new therapies with fewer side effects.
“When I meet with patients with Duchenne and their families today, we have a very different conversation than we might have had 10 years ago,” Apkon said. “Today I ask my patients ‘What do you want to be when you grow up?’ because I believe in their future. I’ve been able to look ahead and see the research being done nationally and internationally and there seem to be treatments on the horizon.” Read full post »
The following is part 2 of our two-part series on ECPR, a combination of CPR and ECMO offered at Seattle Children’s Hospital to save the most fragile patients’ lives. Part 1 covered Hannah Mae Campbell’s incredible story where ECPR and a heart transplant saved her life and allowed her to be the thriving toddler she is today. Here, we discuss how Seattle Children’s has spearheaded a first-of-its-kind ECPR simulation program to improve the process that allows the hospital to save patients in a time of crisis.
In an ECPR simulation in Seattle Children’s neonatal intensive care unit, the surgeon works to get the mannequin on the ECMO pump.
ECPR takes place when a patient goes into cardiac arrest, does not respond to CPR and is then put on Extracorporeal Membrane Oxygenation (ECMO), a machine that functions for the heart and lungs when the organs fail or need to rest. Hannah Mae Campbell’s experience demonstrates the importance of technology like ECMO and why it’s important to continually improve complex, life-saving processes like ECPR.
Since January of this year, Seattle Children’s has executed the largest-scale ECPR simulations in the nation, with medical staff coming together bimonthly to practice as though they were in a real ECPR situation. Even though Seattle Children’s ECPR outcomes are higher than the national average, the hospital initiated the simulations with the goal of standardizing each step of the process to further improve outcomes for patients. Read full post »
In the video above, take an inside look at Seattle Children’s Hospital’s Cancer Care Unit and meet the individuals at Seattle Children’s dedicated to helping children and teens conquer childhood cancer, the second leading cause of death in children ages 5-14.
Tour the country’s first adolescent and young adult cancer unit thanks to a guide who knows the unit all too well, a former patient. See first-hand the cutting-edge research that is saving and enhancing the lives of children and adolescents – from using the body’s own immune system to fight cancer to a relatively new form of radiation therapy that offers hope to children with recurrent neuroblastoma. Read full post »
Dr. Abby Rosenberg is the medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program
After a child has been diagnosed with cancer, one of the first conversations we have with families is about clinical research. In fact, almost all children with cancer have the opportunity to participate in research, and many parents are asked to make decisions about enrollment early in their child’s cancer experience. The question we as researchers have to ask ourselves: Is this unfair? Parents are already struggling with the nearly impossible tasks of accepting their child’s cancer, assimilating huge amounts of new (perhaps confusing) medical information, and uprooting their lives to meet the demands of illness. Can they also make educated decisions about enrolling their child in clinical research?
Many ask, “What would you do if it were your child?” The question is not surprising; parents often make cancer-treatment decisions by “trusting staff.”1 Unfortunately, the answer is often, “I don’t know.” And that answer is true.
We don’t know how it feels to walk in your shoes, with your family’s values, perspectives and relationships. We also come from a different perspective, one where research is embedded in our training and guides almost all of our medical decision-making. We believe in research, but we don’t want to bias you with that belief. (As an aside, I’m pretty sure that all of my training and perspective would be forgotten if it were my own child, and I would ask the very same question of my medical providers. Like you, my single goal would be to do the right thing for my child.)
Read full post »
A student examines DNA in the Science Adventure Lab.
Seattle Children’s Research Institute’s Science Adventure Lab has been inspiring future scientists at schools across Washington state since 2009. When the 45-foot mobile lab rolls onto campus, students in grades 4 through 12 put on safety aprons and gloves and perform science experiments using real laboratory and medical equipment. While learning about nutrition, infectious diseases and the respiratory system, students begin to imagine career possibilities in health science.
“It’s amazing to watch their eyes light up when they first discover how fun and exciting science can be,” said Dr. Rebecca Howsmon, lead instructor on the Science Adventure Lab. “Unfortunately, we can’t be everywhere all of the time, so we decided to make our curriculum available online.”
The Science Adventure Lab has launched a new website designed to provide innovative, educational experiences that ignite new passions for science and enhance science education in schools and at home. The new site features links to online games like Guts and Bolts – which allows users to progress through 12 interactive levels while learning about the interplay of human body systems – and Genome Cache, an app that allows users to explore the human genome through clues, fun facts and trivia questions. There are also animated videos created by the Science Adventure Lab team that introduce students to science concepts and vocabulary.
Read full post »
Antibiotics can be used as life-saving therapies, but many experts believe they are prescribed more frequently than they should be. This practice puts individuals at risk of dangerous side effects and exposes the public to drug-resistant bacteria.
To better understand how antibiotics should be prescribed, Dr. Matthew Kronman, an infectious disease expert at Seattle Children’s Hospital and a member of Seattle Children’s Research Institute’s Center for Clinical and Translational Research, led a study published today by the American Academy of Pediatrics, addressing how antibiotics are used to treat common respiratory infections. He discovered there are approximately 11.4 million unnecessary antibiotic prescriptions written to children and teens each year in the United States.
We asked Kronman the following questions to learn more about the overprescribing of antibiotics and his recently published research:
Why aren’t antibiotics appropriate to treat all respiratory infections?
Kronman: Respiratory infections are one of the most common reasons children and adolescents receive prescriptions for antibiotics, but not all of these illnesses benefit from antibiotic use. Antibiotics are only effective in treating bacterial infections. Many respiratory infections are viral, and therefore, not helped by antibiotics. Read full post »
Have you ever wondered what kind of research is happening at Seattle Children’s? Seattle Children’s Research Institute is giving you a glimpse inside the hospital and labs in the new video series “Faces of Research.”
In two-minute videos, KOMO News’ Molly Shen talks with eight Children’s scientists and doctors about their work to better understand, treat and cure the diseases, conditions and health issues that affect children such as epilepsy, liver disease, HIV, congenital heart defects, mitochondrial disease, cancer, disorders of the immune system, and disparities in physical activity and nutrition.
The videos feature: Drs. Rebecca Gardner, Franck Kalume, Lisa Maves, Jason Mendoza, Karen Murray, Albert Quintana, Troy Torgerson and Thor Wagner.
Watch the videos below or see them all online.
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Dr. Megan Moreno, investigator in Seattle Children’s Research Institute’s Center for Child Health, Behavior and Development and adolescent medicine expert at Seattle Children’s Hospital.
Today’s teens are the first “digital natives” who have grown up with the internet. So much of what they learn about online safety comes from their peers, but what lessons are they teaching one another? To find out, Dr. Megan Moreno, an investigator in Seattle Children’s Research Institute’s Center for Child Health, Behavior and Development and adolescent medicine expert at Seattle Children’s Hospital, led a study to discover what teens felt were key safety issues and what messages they could be sharing with their peers. She shares her findings here:
Most teens today, including those I see in clinic each week, spend time on social media sites such as Facebook, Twitter and Instagram. While these sites provide adolescents with numerous benefits, including social support and exposure to new ideas, there are also risks of internet use, such as cyberbullying and invasion of privacy. Educating adolescents about how to protect their privacy and use the internet safely may prevent many risks. However, there aren’t any widespread, tested and comprehensive resources available to teach these skills to teens because the internet is still a relatively new phenomenon. Most teens say they learn about internet safety from their peers, but it’s unclear what lessons they may be learning in this way. Our research team led a study to discover what teens felt were key safety issues and what messages they could be sharing with their peers. Read full post »
Brenda Senger and her daughter Tessa.
Tessa Senger, of Spokane, Wash., appeared to be a perfectly healthy child until she began having seizures at age 4. Her mother, Brenda Senger, took Tessa to a local neurologist, who diagnosed her with epilepsy. But the treatments prescribed to Tessa did not lessen her seizures, which were occurring up to 50 times each day. Tessa grew weaker and began losing weight.
“I felt helpless,” her mom said. “I just wanted her seizures to stop and for her to start growing again.”
Eventually, Tessa was referred to Seattle Children’s Hospital, where Dr. Russell Saneto, director of the Mitochondrial Medicine and Metabolism Care Team at Seattle Children’s and an investigator at Seattle Children’s Research Institute’s Center for Developmental Therapeutics, diagnosed her with a mitochondrial disease. Saneto prescribed a vitamin cocktail and seizure medications that changed Tessa’s life. The tiny girl, who weighed just 35 pounds until age 6, finally started gaining weight and her seizures stopped almost completely. Tessa is now 15 years old and has only had two seizures since second grade. She is healthy enough to begin reducing her seizure medications.
“Tessa is just thriving year after year,” Senger said. “I am thankful every day that we found Dr. Saneto and the support of Seattle Children’s Hospital.”
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Dr. Laura Richardson, adolescent medicine specialist at Seattle Children’s Hospital and principal investigator in the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute.
A new study from Seattle Children’s Research Institute suggests integrating mental health treatment into primary care may reduce depression symptoms in teens.
Challenges accessing treatment
While 14% of teens experience serious depression, few receive evidence-based treatments for mental illness. This puts them at greater risk of suicide, substance abuse, early pregnancy, low educational attainment, recurrent depression and poor long-term health.
Accessing mental health treatment can be challenging for patients and their families. In the typical clinic, teens diagnosed with depression by a primary care doctor are referred to mental health specialists for treatment, requiring their families to identify an available specialist, set up an appointment and travel to a new care setting. Dr. Laura Richardson, an adolescent medicine specialist at Seattle Children’s Hospital and principal investigator in the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute, said she often sees patients who have not been able to connect with a mental health provider return to her with worse depression symptoms. Read full post »