On the Pulse

Finding My Village

Kristin Jarvis Adams (back right) found different forms of support when her son Andrew (bottom right) was diagnosed with autism, and then years later when he battled a rare immune disorder. Also pictured are her husband, Jon, and daughter, Hannah.

The proverb that suggests it takes a village to raise a child can be easily adapted for parents facing the various challenges that come with having a child with special needs and circumstances. Parents sometimes need the support of a village. Author Kristin Jarvis Adams shared her experiences with On the Pulse in finding her village when her son, Andrew, was diagnosed with autism and years later, when he was treated and overcame a rare immune disorder at Seattle Children’s and Seattle Cancer Care Alliance. Adams, who is a member of the Autism Center Guild at Seattle Children’s, tells her family’s story in her book The Chicken Who Saved Us: The Remarkable Story of Andrew and Frightful.

For 10 years my husband and I had been making trips to and from Seattle Children’s with our autistic son, Andrew, who suffered from an unheard of progressive inflammatory disease. Andrew had been in the hospital for months, his body riddled with gaping ulcers, his organs compromised by chronic inflammation. Now we were in the middle of chemotherapy and radiation treatments that were preparing him for an experimental bone marrow transplant. It was our last hope.

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It’s a Messy Topic, but Let’s Talk About Poop

There are a lot of ways to describe it: soft, hard, brown, green, runny and stinky. It’s a messy topic often discussed behind closed doors, but today, we’re breaking down what you need to know about poop – from its color, consistency and frequency, to what to do when a child is backed up.

According to Dr. Mollie Grow, a pediatrician at Seattle Children’s and the University of Washington, it can be challenging for some families to be open about the body’s natural process of elimination. In other words, it can be hard to talk about poop. There’s often embarrassment talking about the subject when there shouldn’t be.

“As pediatricians, we get really comfortable talking about poop,” said Grow. “We try to normalize the conversation with patients and families.” Read full post »

Liquid Nicotine and Kids Don’t Mix

March is the month to spring forward with daylight saving time, enjoy the college basketball tournament and renew efforts to prevent poisonings through National Poison Prevention Week. Last March, Dr. Suzan Mazor, medical director of Toxicology at Seattle Children’s, gave advice for how to give and store medicines safely. This year, she’s sharing information on how to prevent childhood poisonings from a newer product – liquid nicotine used in electronic cigarettes, or e-cigs.

E-cigs and other Electronic Nicotine Delivery Systems became available in the U.S. about 10 years ago, and with their arrival came a growing number of calls to poison centers related to nicotine exposures in children. Read full post »

Kenley Snowboards With Prosthetics, Proves if There Is a Will There Is a Way

Kenley Teller, 6, snowboards with two prosthetic legs.

Watch 6-year-old Kenley Teller snowboard down a slope and you’ll notice two things right away: a big smile on her face and her fiery red hair billowing in the wind beneath her helmet. What is not apparent are her two prosthetic legs.

“She’s free when she snowboards,” said Kenley’s mother, Mary Teller. “I don’t want to say she feels normal, because how do you define normal anyway? She may need to do things a little different than other people, but she can still do them. I’m constantly in awe of her.” Read full post »

The Unsung Heroes of the Sidelines

Tara Peerenboom is one of 35 licensed athletic trainers in the Seattle Children’s Athletic Trainers Program.

They are a constant presence on the sidelines of sporting events, but they don’t adorn a jersey or get a trophy at the end of a season. We see them as they spring into action when an athlete suffers an injury. They run onto the field or court and quickly access and care for an athlete writhing in pain, but their time in the limelight is short lived, at least from what we see from the stands.

What you don’t see are the hours athletic trainers spend before, during and after games preparing, rehabilitating or counseling athletes and coaches. And so, in recognition of Athletic Training Month, On the Pulse shadowed Tara Peerenboom, an athletic trainer at Seattle Children’s, to get a behind the scenes look at her role both on and off the field.

“People see us on the sidelines and think of us as the individuals who give water to athletes,” said Peerenboom. “They don’t see the time we spend in the athletic training room before, after and during a game or practice. We’re not just medical providers. Our athletes trust us, and we’re there for them during difficult times. Taping and getting ready for games is a small part of our work.” Read full post »

Care Team’s Casting Creativity Brings Joy to Patients

Maggie Burke, 9, aspires to be an Olympic gymnast.

When 9-year-old Maggie Burke broke her elbow after an unusual landing while vaulting at gymnastics practice, she was concerned her dream may be in jeopardy.

She’s a competitive gymnast with a dream to compete in the 2024 Olympics, and so when she found out her injury would require surgery and a cast, she was feeling anxious. She never needed surgery before and her emergency trip to Seattle Children’s was the Burke family’s first trip to the hospital.

“During surgery prep, the staff found out about Maggie’s passion for gymnastics and her dream,” said Maggie’s mother, Odilia Burke. “We felt greatly supported by kind, caring and knowledgeable people that would soon have our daughter in their hands of expertise. What we weren’t expecting was the surprise we received when Maggie came out of recovery.”

In the operating room, while doctors expertly cared for Maggie’s elbow and set her arm in a cast, a surgical technologist went to work designing something special just for Maggie. It was a small gesture, but just what the doctor ordered. Read full post »

Preventing Throwing Injuries in Young Athletes

Young pitchers can avoid throwing injuries by following some simple guidelines.

According to The American Journal of Sports Medicine, more than 15 million people will be playing baseball and softball this spring and summer, nearly 5.7 million of which are children in eighth grade or lower. Dr. Michael Saper, an orthopedic surgeon and sports medicine specialist at Seattle Children’s, has some useful information about how young players can avoid arm injuries.

Before joining Seattle Children’s, Saper trained under Dr. James Andrews, a renowned orthopedic surgeon who has treated many professional athletes, including hall of fame pitchers Nolan Ryan and John Smoltz. It was in working with Andrews that Saper developed his passion and expertise for the treatment and prevention of throwing elbow and shoulder issues.

Saper noticed injuries that were common in high-level athletes occurring in younger athletes and realized that education about how to stay healthy is just as important as treating the patient after a serious arm injury occurs.

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Study: PAL Program Drastically Reduced State’s Antipsychotic Prescriptions for Children

The Partnership Access Line (PAL) has helped reduce antipsychotic prescriptions for Washington children enrolled in Medicaid by 49% since 2006.

Antipsychotic prescriptions for children enrolled in Washington state’s Medicaid program decreased by nearly half following the implementation of an innovative psychiatric consultation program affiliated with Seattle Children’s, according to a study published in the March 2017 issue of Health Services Research.

The 49% reduction in prescriptions from July 2006 to 2013 is a reversal from the steady statewide growth in the use of antipsychotics to treat children prior to the introduction of the Partnership Access Line (PAL). The number of children on Medicaid treated with antipsychotics in Washington decreased by 940 despite an increase of 186,855 enrollees in the joint Federal/state program during the study. According to the study, this counters a national trend of increased antipsychotic use with children from 2002 to 2015.

Other key findings in the study include:

  • High-dose antipsychotic use fell by 57.8% in children 6 to 12 years old; and by 52.1% in teens
  • 1,458 providers received a direct patient consult through PAL
  • 759 providers attended at least one of PAL’s 31 general psychopharmacology education conferences

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Study Links Exposure to Common Chemicals During Early Pregnancy to Altered Hormone Levels in Fetus

Food is the most likely source of exposure to the most harmful phthalates, which can also be found in household and personal care products.

Exposure during early pregnancy to some phthalates—man-made chemicals commonly found in household plastics, food and personal care products—can have adverse impacts on developing fetuses, according to a new study led by Dr. Sheela Sathyanarayana, a pediatric environmental health specialist at Seattle Children’s Research Institute and associate professor at the University of Washington.

The study, published in The Journal of Clinical Endocrinology & Metabolism, found that increases in exposure to certain phthalates during the first trimester of pregnancy was associated with higher estrogen concentrations and lower testosterone concentrations in the fetus, thus increasing the chance of a genital abnormality in male babies at birth.

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The Comfort of a Diagnosis and Knowing You Are Not Alone

Emmy Anderson and her daughter Wren sharing a happy moment

When your child is sick with a rare condition that can’t be named, the search for an answer can seem frustrating and hopeless. For Kirk and Emmy Anderson, navigating the lengthy diagnostic process for their daughter, Wren, was something they endured with the hope that an answer would eventually come.

By about 6 months of age, Kirk and Emmy noticed that Wren was not meeting her developmental milestones. After a febrile seizure led to a stay in in Seattle Children’s Neonatal Intensive Care Unit (NICU), they received the news that a brain MRI showed Wren had a decrease in the amount of white matter in the brain, as well as a fluid filled sack growing between her brain and spinal cord. Despite the findings, doctors didn’t yet know what was causing these issues to arise.

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