Archive for October 2012

Monthly Archive

Seattle Children’s Cancer Patient Presents “Haunting: A Head” – A Halloween Video

10-year-old Jenna Gibson, a Maple Valley, Wash. resident, has been a patient at Seattle Children’s since she was initially diagnosed with acute myeloid leukemia earlier this year.

While staying at the hospital’s cancer care inpatient unit recently, she had the idea to create for her friends and family a video entitled: “Haunting: A Head” – all in the spirit of Halloween fun.

In the video, Jenna, hidden beneath a magical hospital robe that makes everything but her head invisible, can be seen on a spooky hijinks across the floor.

“I wanted to show some of the things that were frustrating but kind of funny about being in the hospital,” said Jenna. “And I wanted to use only my head because it seemed mysterious.”

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Gene Repair Breakthrough Led by Seattle Children’s Research Institute

Imagine a prowler casing a neighborhood, looking for a way into a home. That’s essentially what HIV, the human immunodeficiency virus, does:  It moves through the bloodstream trying to gain entry to T-cells — the primary warrior of the immune system. A special receptor on the T-cell’s surface (called CCR5) is the open door it seeks. Once it gains entry, the virus hampers a T-cell’s ability to do its job, leaving people vulnerable to infection and disease — and enabling HIV to spread.

Now imagine you can lock that door forever. The virus can’t enter the T-cells and interfere with the immune system and the body can fight off the infection.

Drs. Dave Rawlings, Andy Scharenberg and a team at Seattle Children’s are getting close to making that vision a reality. Working with colleagues at University of Washington and Fred Hutchinson Cancer Research Center in the Northwest Genome Engineering Consortium, they have figured out how to modify genes and knock the CCR5 receptor off T-cells.

Dr. Dave Rawlings, Dr. Andy Scharenberg (right)

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Tips for a Fun and Safe Halloween

Some would say Halloween has always been scary.

It was first called “All Hallows’ Eve,” and people believed that there were no barriers separating the world of the living from the world of the dead. As a result, many locked themselves in their homes because they feared that ghosts and demons were roaming the streets. If people absolutely had to go out, they disguised themselves in costumes.

Halloween has become a lot more fun today, peppered with costumes, sweet treats and community events.

But, if you’re a parent, it can still generate some anxiety.

To help ease any worry, Seattle Children’s would like to share some guidelines  to help you and your child have a fun and safe Halloween.  Watch the video above for additional tips and treats.

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New Procedure Improves Life for Children with Hydrocephalus

Kristin Crow got a big surprise when her little bundle of joy arrived prematurely while she was visiting family in Texas in November 2011. She gave birth to her son, Skyler Crow, who was born at 28 weeks, weighing just two pounds, seven ounces.

When in utero, Skyler had been diagnosed with ventriculomegaly, or enlarged ventricles in the brain, and he developed hydrocephalus soon after he was born while in the neonatal intensive care unit (NICU) in Texas.

Hydrocephalus is one of the most common congenital conditions in children, affecting 1 in 500 to 1,000 births. It is a condition where cerebrospinal fluid (CSF) doesn’t reabsorb properly in the brain, causing a harmful build-up. This can cause problems with the development and function of a child’s brain, and without treatment, hydrocephalus can be deadly.

The traditional treatment for hydrocephalus is surgery to implant a shunt, or a small tube, that drains spinal fluid from the brain ventricles down to the abdomen where it is absorbed. Doctors told Kristin and her husband that a shunt was their only treatment option.

“I was terrified as shunts come with a lot of risks,” said Kristin. “There’s a high rate of infections, complications and we would be in the NICU for a very long time, possibly more than five months.”

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Do You Really Need a Flu Shot Every Year?

The answer is yes. The Centers for Disease Control and Prevention (CDC) recommends that everyone who is at least six months of age should get a flu vaccine this season. 

Vaccine vials

The influenza virus constantly mutates, changing its shape and structure each and every year to survive. Therefore, in order to effectively be protected against the virus, the composition of the vaccine also changes each year. The newly formulated vaccine then adds to the immunity built up from receiving the shot in previous years.

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Restaurant Environments Improve, Sort of, Under Nutrition-Label Regulation

Buy one, get one for 1 cent.  Be a hot tamale, eat a hot tamale.  Try our new salted carmel cake pop.

We see slogans like these on billboards and at restaurants on a daily basis.  Would a nutrition-labeling regulation that requires restaurants to post calorie counts help spur a reduction in the use of these slogans, which are known as “barriers to healthful eating?”  That’s what a research team, led by Brian Saelens, PhD, of Seattle Children’s Research Institute, set out to find. The study, “Nutrition-labeling regulation impacts on restaurant environments,” is published this week in the American Journal of Preventive Medicine.

Young man looks at the menu in a fast food restaurant

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Preventing Preterm Birth Initiative New Projects Announced

Mom and Baby – India
© Paul Joseph Brown/GAPPS

Projects seek to undercover how the following conditions lead to preterm birth, low birth weight and stillbirth:

  • Malaria infections of the placenta
  • Infections of the female reproductive tract
  • Disruption of the normal bacteria and other micro-organisms of the lower female genital tract
  • Body’s receptors for progestin-based therapies
  • Infections that cause inflammation in the uterus

Dr. Kevin Kain had completed medical school and was about to embark on a career as a surgeon in Canada, but on a whim he and some friends decided to take a trip to Africa.

He ended up spending a year driving the entire length of the continent, camping along the way.  “I was immediately struck that people were dying from diseases all around me that I had never even been taught about,” he says.

He returned to North America and decided to devote his career to global health. “It seemed this incredible inequity in education about what the major burdens of disease were in the world and that we didn’t know anything about them. I got very passionate about learning about them and then wanting to do something about them.” Read full post »

Children With Disabilities Should Go for the Gold in Life

If we needed additional evidence, Brad Snyder’s story makes it perfectly clear that just because you’re a child with a disability, you don’t have to settle for second place.

An American swimmer on the United States Paralympic team, Snyder graduated from the Naval Academy and went to Afghanistan to serve his country. In September 2011, a roadside bomb exploded in his face and cost him his eyesight. But he still managed to find the finish line first, winning two gold medals in the summer of 2012 at the London Paralympic Games. And, among fully blind swimmers, Snyder is currently the best in the world for the 100-meter and 400-meter freestyle events. His story can be found at NBCNews.com.

The London Paralympics – parallel to the London Olympics, and for people with physical disabilities – were extremely competitive, featuring a host of world champions like Snyder.

Indeed, the recent Paralympics in London were the largest ever, with 4,200 athletes from 164 countries competing in 503 events in 20 sports. Another key success metric: some 2.3 million tickets – the most ever – were sold.

Some of the athletes at the London Paralympics were in wheelchairs, some were wholly or partially blind, some had three, two, one or no limbs, some had dwarfism, some had intellectual deficits, some had complex coordination and muscle-control problems, and some had multi-symptom conditions like multiple sclerosis.

But the most important thing about the Paralympics was that it focused on people who were competing to win – it wasn’t about their disabilities.

And that’s a vital message that any child with a disability needs to internalize. To put it simply and bluntly: You can do it; you can do anything.

I’ve seen this indomitable will triumph time and time again – in London, and in Seattle.

As an assistant coach for the U.S. Paralympic swimming team in London, I worked with all of the 34 swimmers to help maximize their performance. Meanwhile, back home at Seattle Children’s, where I’ve been for 33 years, I’m a nurse in the Rehab / Neuromuscular Clinic. I basically case manage patients in our program with traumatic brain injury, spinal cord injury, progressive neuromuscular diseases, Cerebral Palsy and arthrogryposis.

The opening ceremonies for the London Paralympics totally reinforced the “take no prisoners” spirit I mentioned above.

One of the highlights of that evening was the attendance of physicist Stephen Hawking, who was given two years to live in 1963 after he was diagnosed with motor neuron disease.

“The Paralympic Games is about transforming our perception of the world. We are all different, there is no such thing as a standard or run-of-the-mill human being, but we share the same human spirit,” said Hawking from his wheelchair, speaking through his famous computerized voice system for communication. “What is important is that we have the ability to create … however difficult life may seem, there is always something you can do and succeed at.”

None of this would have been possible without a man named Sir Ludwig Guttmann, a Jewish neurosurgeon who fled Nazi Germany, pioneered athletic competition as therapy for patients with spinal injuries, and organized an archery competition for 16 patients at Britain’s Stoke Mandeville hospital in 1948, the year that London hosted the first Olympics after World War II. Guttmann’s initial efforts led to the first full-scale Paralympics in 1960, in Rome, and in 1964, in Tokyo.

Obviously, Ludwig Guttmann, who died in 1980, never knew Brad Synder, who was born in 1984. But, when it comes to overcoming disabilities, the two share the same toughness and tenacity.

“I know there are a lot of guys out there, guys and girls, who are struggling with a tough hand,” said Snyder this past summer. “And, hopefully, my success at the Paralympics can reach out to those people and say, ‘Hey, there is a way forward; there is something you can go out and do that will give you that relevance and success again.’ ”

To paraphrase Snyder’s words, in the end, there’s always a way forward – and children with disabilities must find it in order to fulfill their rich potential and ultimate destiny.

D. “Kiko” VanZandt is a nurse with the Rehabilitation Medicine team and the Neuromuscular Clinic at Seattle Children’s Hospital. She is also an Assistant Coach for the U.S. Paralympic Swimming Team.

New Survey Shows Almost Half of Teens with Autism Are Bullied

Unfortunately, many children are bound to face occasional teasing and rejection throughout their school years, and we now know that this bullying can affect more than just egos. Previous studies have found kids and teens who are bullied tend to be more depressed, lonely and anxious, and perform worse in school than those who aren’t picked on. So when this bullying is paired with particularly vulnerable students, such as children with autism, life can become even more difficult.

A new survey of parents shows that close to half of teens with an autism spectrum disorder (ASD) are bullied at school. This rate of 46.3 percent, published in the Archives of Pediatrics & Adolescent Medicine, is much higher than the estimated 11 percent of bullied teens in the general population. Read full post »