When mother's intuition kicked in, Diane Capouch did what most moms would do and called the doctor.
Her son, Hunter, 12, didn't seem right. He had put on weight, was lethargic, moody and just not himself. She asked the doctor to test Hunter for a multitude of things - one of those being diabetes.
"There was something just not right with him," she said.
Though doctors initially didn't think Hunter had diabetes, he still was struggling, so Capouch took it upon herself to buy a meter and test her son's blood sugar. The results came back high, with his blood glucose levels into the 300s, higher than the 80 to 150 range that's considered normal.
Soon the student who attends Valley Middle School in Grand Forks was brought back in to see a doctor and was diagnosed with type 1 diabetes.
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Hunter then got a dose of good news when he heard he qualified for a new trial study at Sanford Medical Center to test a new immunotherapy for juvenile type 1 diabetes, called the T-rex study. Type 1 diabetes is an autoimmune disease where the body's immune system attacks the insulin-producing cells in the pancreas, causing diabetes.
Researchers in the trial are studying the effectiveness of cell therapy with expanded regulatory T cells - also known as T-reg cells - to treat type 1 diabetes. T-reg cells regulate the body's immune system.
In the study, a participant's own T-reg cells are extracted from the body, purified and multiplied, and then returned to blood circulation. Researchers then monitor if beta cells and insulin production can be preserved through this type of immunotherapy.
The study is limited to patients between the ages of 12 and 17 who have been diagnosed with diabetes in the past 100 days. In those 100 days during the diagnosis, a person's body is in the "honeymoon phase" and still is producing insulin,
The hope, said Dr. Luis Casas of Sanford Medical in Fargo, is that these expanded T-reg cells can rebalance the immune system and stop the attack on beta cells.
"During the honeymoon phase, they can have really nice control, and if we can keep that going forever, these are kids who will become adults and have the ability to keep having really great control with as little effort as possible," Casas said.
Type 1 diabetes can be a tough disease for a person to manage, Casas said. Unlike other autoimmune diseases such as hypothyroidism, where a person takes a pill and can keep it in check, diabetes can make life difficult for those who have it.
Hunter said his case of diabetes keeps him out of gym class if his levels are not high enough, and it even has caused him to miss some school days.
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"Diabetes is one of those things that has a lot of complications associated with it," Casas said. "It changes the way you eat; you're taking four, five, six, seven, eight shots a day. You have to monitor blood sugars. Diabetes is one of those autoimmune conditions that's very serious and very difficult to manage."
Casas said they hope to finish working with the first 18 patients by August, and then analyze the data before, hopefully, expanding the program to include some 150 patients in 15 different locations.
When Hunter was first asked to participate in the survey, which will last about 90 days, he said he jumped at the opportunity. With Hunter being a big fan of "Jurassic Park," Capouch saw the study's name as a sign.
"I said, 'Hunter, maybe this is a sign that you're supposed to do this,' " she said.
Last week, Hunter got an infusion, becoming just the sixth kid in the nation to have such a procedure as part of this study. Throughout the study, he will go to Fargo every few weeks to get his blood drawn. The doctors will check his blood gluclose levels and run a few tests on him.
Though Hunter doesn't know if he got a placebo or the actual dose, he and his mom said they are hopeful for a positive outcome. If it doesn't help him, Hunter said, he hopes it will help somebody else down the line.
"I just want to help other people," he said. "I'm excited to see the outcome of this."
