For too many, a type 1 diabetes diagnosis comes as a complete surprise, even sometimes after weeks of telltale symptoms. Not so for the Ohmer family.
When Amy Ohmer’s oldest daughter began experiencing symptoms, the family already knew the drill. Amy’s youngest, Olivia, was hospitalized for the stomach flu three years before. Amy didn’t think the diagnosis fit what was happening, and so she searched online for what could be causing the symptoms. A blood test the next morning confirmed her hunch – Olivia had type 1 diabetes.
Within three years, the Ohmers, like so many families affected by type 1 diabetes, had to become experts in managing this chronic condition. Because of this, when Amy’s oldest, Reece, began experiencing feelings of shakiness, a common symptom of hypoglycemia, she had the presence of mind to borrow her sister’s blood sugar meter, and their mother made the diagnosis.
“Having two kids with type 1 diabetes was unheard of at the time,” Amy says. “People always wanted to know how we handled it.”
Amy tackled this unique experience both empirically and heroically. She and her daughters decorated their sharps container with fun stickers and created felt squares to hold their insulin pumps. She kept a mini-refrigerator outside of Reece’s and Olivia’s bedrooms in case they needed easy access to juice or insulin in the middle of the night. After friends slept over at their house, they went home and asked their parents for mini-refrigerators, too.
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Amy’s friends encouraged her to share her experiences and advice. She started Naturally Sweet Sisters, a blog providing best practices for families raising children with type 1 diabetes. She was determined to highlight the positive perceptions and to challenge the negative perceptions of life with type 1 diabetes.
With a family so engaged in blood sugar management, it was only a matter of time before they became advocates for improving care, as well. It happened after a doctor’s visit when Reece became upset and apologized to Amy for not paying better attention to her HbA1c levels. Amy helped Reece channel her feelings into something positive, and they created a five-question survey that children with type 1 could use to feel empowered and prepared for visits to the doctor.
“Kids could say, ‘This is what went well in the past three months,’” Amy says. “‘And this is what I want to work on going forward.’”
The family introduced the survey to their social worker, who eventually shared the project with Joyce Lee, MD, a professor in the department of pediatrics and communicable diseases at the University of Michigan. Serendipitously, Dr. Lee had just joined a novel initiative called the T1D Exchange Quality Improvement Collaborative, a network of physicians and educators from 10 diabetes centers. The Collaborative was spearheading a unique model to improve care by using the quality improvement method pioneered by the auto industry. Participants learn to measure their current care practices and patient outcomes, and then make small changes in an attempt to improve care. Successes are then shared and implemented throughout the network.
At the time, the Collaborative was in its design stages. Dr. Lee invited the Ohmers to join the first Collaborative meeting to provide an important patient perspective. The whole family attended, adding their voices to create a feasible list of quality improvement tasks that would eventually become Collaborative initiatives.
Amy eventually became co-chair for the Collaborative’s Patient/Parent Advisory Board, adding her wealth of parental experience to the Collaborative’s activities. She now aims to advance the creation of a database that tracks when adolescents age out of pediatric care and begin living independently, believing it is crucial to examine these times of transition. To collect this data and ultimately improve quality of life outcomes for this population, she stresses that experts should not always assume that teens are rebelling.
Amy ultimately hopes every teen with type 1 diabetes can have the chance to feel as empowered as her daughters. Reece and Olivia are now moving through high school with type 1 diabetes. They are writing about their experiences, advocating to Congress, and plotting their future.
“These are kids with a tremendous amount of stuff going on,” she says. “Ask them, talk to them, and get their perspective.”
Photo: T1D Exchange hosts a conference to improve quality of Type 1 Diabetes treatment at the Hyatt Regency in Aurora, Colo on November 9, 2017. Photo by Ezra Ekman / ShotInTheAct.com.