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Boy Scout Gives Back After His Struggle With Rare Condition

The Pintuff family

When Aidan Pintuff was 4 years-old, he awoke to find the right side of his jaw swollen, red and very sore. Living in Virginia at the time, Aidan’s parents took him to the emergency room where he was given antibiotics. The swelling and pain went away and the family moved on, but they had no definitive answer on what caused the condition.

As Aidan grew up, symptoms would flare up from time to time, particularly if he was hit in the face. Their local doctor had initially diagnosed him with cellulitis. Aidan continued to live his life as a young boy, doing all the things that an active child would do like wrestle with his brother, play sports and participate in the boy scouts.

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Compassionate, Coordinated Care at Seattle Children’s Gender Clinic

Jay waits for his appointment at Seattle Children’s Gender Clinic

Sitting unassumingly on the exam table, Jay’s feet dangle above the floor and his hands are folded in his lap. He displays a warm smile when asked how he’s doing. His mother, Cynthia, looks at her son with an overt sense of pride and the type of love that needs no words to express its presence.

Jay is awaiting the arrival of the Gender Clinic care team and as his appointment draws near, he talks about what life is like as a 10th grader in the Seattle area and his hopes for his future. As his father and brother before him, Jay wants to go into the armed services. His particular branch of interest is the Air Force and he wants to go through officer training at West Point.

Assigned female at birth, Jay also talks about his desire to fully transition to the male gender that he has identified with since he was a baby and the challenges that it presents, especially at his young age.

Cynthia, a cancer survivor herself, knows all about taking on challenges. Her experience as a patient taught her about the medical system.

“I know how important it is to be your own advocate,” she said. “I am so proud of Jay for his bravery in being his own advocate and taking control of his own medical decisions.”

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Finding Hope, Life-Changing Care 2,200 Miles From Home

Alexis, a 7 year-old vascular anomalies patient from Indiana

By the time Alexis Stringer was 7 years-old, she had already undergone a lifetime’s worth of medical procedures; 47 of them to be precise.

Alexis was born with purple areas on her face and neck. At first, doctors thought it was due to birth trauma. But over time, when Alexis was 7 weeks old, doctors determined she instead had a series of blood and lymph vessels that were not developing properly, which are known as vascular anomalies.

The traditional treatment for this disfiguring condition meant that Alexis underwent a procedure called sclerotherapy where chemicals are repeatedly injected into the veins to make them shrink. The procedure can be painful and has to be performed several times under general anesthesia. In addition to the risks associated with repeated anesthesia, sclerotherapy came with additional risks as the high dose of the substance injected has the potential to destroy healthy tissue and even stop one’s heart.

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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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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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