Published date: April 05, 2024
Marie White’s instincts, expertise and willingness to try a new treatment through Arkansas Children’s may mean her son can live for years without Type 1 diabetes. Earlier this year, 11-year-old Jesse White became the first pediatric patient in Arkansas treated with Tzield, an FDA-approved drug therapy for delaying the onset of Type 1 diabetes.
Marie’s journey to get her son treated for diabetes started two years ago when he began showing symptoms. As someone who’s worked in health care since she was 18, Marie knew something was wrong when her son became prone to outbursts of anger, developed headaches more frequently and was uncommonly thirsty. She told her pediatrician at the time, “He can drink 64 ounces of water in 30 minutes, go out to play, and come back 30 minutes later and drink another 32 ounces.” Several members of her family have Type 2 diabetes, so Marie suspected Jesse might be pre-diabetic. She wanted Jesse tested, but her pediatrician disagreed.
Screening for Type 1 or Type 2 diabetes in children is not standard practice. Routine checkups by a pediatrician include vision and hearing tests, blood pressure measurement to screen for hypertension and checking a child’s spine for scoliosis. Typically, a child will only be screened for Type 2 diabetes if they show multiple symptoms. The Pediatric Endocrine Society lists the most common signs as:
Jesse had many of those symptoms, so Marie searched for a new pediatrician until she found one willing to provide a referral to Arkansas Children’s nationally ranked endocrinology team. Screening for Type 1 diabetes is even less common than screening for Type 2, but Jesse was tested for both. Unlike many members of his family, he did not have Type 2 diabetes. Instead, Jesse’s testing showed he was in the middle stage of developing Type 1 diabetes.
Until recently, Type 1 diabetes was understood as a chronic disease that occurred without warning and could not be prevented. Over the past two decades, researchers discovered Type 1 diabetes develops in predictable stages.
Screening indicated that Jesse was in Stage 2 of developing Type 1 diabetes. Fortunately, a new medicine that delays the onset of Stage 3 was available at Arkansas Children’s Hospital (ACH). In late 2022, the U.S. Food and Drug Administration approved Tzield for pediatric patients over eight years old and in Stage 2. Clinical studies showed that Tzield gives patients an average of two extra years between Stages 2 and 3.
Marie talked with the endocrinology team at ACH and researched on her own. “I was a little leery at first,” she said, “because it is a new medication [for pediatric patients], and it had just come out of the trial, but knowing the stories from the other patients and there being a couple that has gone eight years without needing insulin is fantastic. It gives me hope.”
The possibility of having years to prepare Jesse for the lifestyle changes required for people with Type 1 diabetes was a significant factor in Marie’s decision. Every child’s personality is unique, and Marie knew the daily routines of taking insulin, reading nutrition labels and counting carbohydrates would be challenging for her son.
“I have seen a lot of teens and young adults have amputations or be in intensive care units for non-compliant diabetic ketoacidosis. This way, Jesse can grow and mature a little before making those [lifestyle] changes,” she said.
Jon Oden, M.D., chief of pediatric endocrinology at Arkansas Children’s Hospital (ACH) and professor of pediatrics at the University of Arkansas for Medical Sciences (UAMS), points to research showing children move from one stage to the next faster than adults, as one reason the new treatment option is exciting for pediatric endocrinologists.
“It's fabulous,” Oden said, “for all of us.” He calls Tzield “a pathway forward” for children at risk of developing Type 1 diabetes.
The Tzield treatment required 14 consecutive days of infusions at ACH. The Whites live in northwest Arkansas. Marie and Jesse stayed at the Ronald McDonald House near the hospital for over two weeks. Having a temporary home in Little Rock meant Oden and the endocrinology team were always nearby. Being away from home, family and work while undergoing a new treatment was stressful, but Marie said the nursing staff helped with every aspect of care. “They bend over backwards and are amazing. We had some of the best nurses.”
Marie noticed improvements in Jesse’s sleeping habits and attitude during the first week of infusions. While still in the hospital, Jesse talked excitedly about the character he created based on the bestselling “Wings of Fire” books.
“Jesse is back to his fun-loving self. His whole demeanor has changed back to happy-go-lucky. He’s not angry all the time. He’s not drinking all the time.” Marie said just a few days after the treatment was complete, “He’s a completely different kid. He’s back to the happy child that I have known. That kid has been gone for, like, two years.”
Jesse will receive most of his follow-up care at Arkansas Children’s Northwest, the pediatric hospital in Springdale conveniently close to home for Jesse and his family. The extra time granted by the Tzield treatment will allow Marie and the Arkansas Children’s endocrinology team to prepare Jesse for living life to his fullest if or when he develops Type 1 diabetes. Marie hopes screening for the life-altering disease becomes standard practice among pediatricians “because it can save so many kids,” she said.
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