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 »
Gluten has been in the news a lot lately and often gets a bad rap. Some see a gluten-free diet as a cure all for a vast array of stomach problems, including pain, bloating, diarrhea, constipation, and even weight gain and behavior problems.
But gluten – a nutritious mixture of proteins found in wheat and other grains – isn’t necessarily the culprit, says Nancy Nelson, a nurse practitioner at Seattle Children’s in the Gastroenterology and Hepatology program who specializes in stomach problems and inflammatory bowel disease. Cutting it out of your diet may not magically make you feel better.
That doesn’t mean that gluten sensitivity isn’t real – just that it gets the blame more often than it should. And while the cause of stomach problems varies, the symptoms are often very similar making it difficult to figure out how to feel better. Read full post »
More than 30 million Americans have eczema, a skin condition that causes dry, red, extremely itchy skin. It often starts before the age of 5 and can negatively impact children in many ways, including not being able to sleep and lacking focus in school or social situations because of frequent scratching.
I see many patients every week who suffer from eczema and other skin conditions. These patients and their parents often come to clinic with ideas about what causes these skin conditions and how to treat them. Below, I’ve debunked three common myths about eczema that we hear at Seattle Children’s Hospital on a regular basis. 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 »
Baby Genesis before her surgeries
Discovering your child has a craniofacial condition can be a stressful time filled with questions and uncertainties. Seattle Children’s Craniofacial Center aims to not only keep the patient’s needs in mind, but also the needs of the entire family. Below are the stories of two unique craniofacial journeys and how the patients and their families received support throughout the process.
Genesis and family find comfort after early diagnosis
Genesis Murillo is a fun-loving, 4-year-old who was born with bilateral cleft lip and palate – a birth defect that occurs when parts of the lip and roof of the mouth don’t fuse together during pregnancy. Cleft lip and palate affects one in 700 infants worldwide, and is one of the most common birth defects. It can be caused by several factors, including genetic abnormalities, but there is no single cause.
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On Tuesday, Oct. 7, Seattle Children’s Hospital unveiled its new Psychiatry and Behavioral Medicine Unit to families and hospital staff members during an open house.
The new 25-bed unit, designed with input from families, will open to patients later this month and will feature single-patient private rooms, a classroom, group spaces, a dining area and an exercise area and recreation area. When the unit is fully completed in spring 2015, it will double the hospital’s current capacity, allowing Seattle Children’s to better serve children in the region in need of inpatient mental health services.
“The entire space was designed with patient and family input, as well as input from staff members, to ensure the utmost comfort and safety for our patients as well as those caring for them,” said Dr. Bryan King, director of psychiatry and behavioral medicine and program director of Seattle Children’s Autism Center. Read full post »
Sometimes, everyday moments can have the most profound impact on an individual’s life. For Dr. Jeffrey Avansino, a surgeon at Seattle Children’s Hospital, that moment came many years ago as a new attending physician. An appointment with an 8-year-old girl changed his path as a doctor and inspired him to become a national leader in reconstructive pelvic medicine.
“There needed to be a better way”
“I walked into the exam room not really knowing what to expect,” said Avansino. “The little girl I was seeing that day had fecal incontinence and had previously undergone surgery to repair an anal rectal malformation.”
For most of the appointment she hid behind her mother, not wanting to talk. She was socially withdrawn, and her mother explained that she was having trouble concentrating at school. Avansino learned from their discussion that she had been going to school in diapers. She wasn’t able to control her bowels and would have accidents throughout the school day.
“I was shocked,” said Avansino. “I knew I needed to do something to help, but also I couldn’t manage patients like her on an individual level.” Read full post »
Shortly after Julie Wyatt delivered baby Nolan Wyatt on December 15, 2013 in Olympia, she received some startling news. Nolan was diagnosed with a congenital diaphragmatic hernia (CDH) – a hole in his diaphragm – a potentially life-threatening condition. It was something they didn’t see coming. Typically, CDH can be diagnosed before birth using an ultrasound, but Nolan was a rare exception. Read full post »
Making an emergency plan is a challenge for every family, and those caring for kids with special needs have additional issues to consider.
Planning ahead helps make sure you and your children will have what you need even when access to water, electricity and other services you usually depend upon aren’t available.
A project like this can feel overwhelming so many people break it down into smaller steps and gather the items they need over time. The resources below will guide you as you consider your family’s needs and also provide tools and checklists to help you plan along the way.
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