March-April 2021 | Health

By their side

College sophomore Nick Opack has Type 1 diabetes. So does his younger sister and their father. For years they’ve relied on dogs who are specially trained to detect the scent of low blood sugar and alert them when something is wrong.

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Nick, right, with his father, Larry, and their dogs Rainy (blue collar) and Clyde. Photo by Lindsey Max

The alert on Colleen Opack’s cellphone went off around 4 a.m. She grabbed the phone from her nightstand and checked the app that tracks her kids’ blood sugar levels. The sound was warning that her son, Nick, then a freshman at Catholic University, had a glucose reading that was dangerously low.

Nick had moved into his dorm in D.C. a month earlier, in August 2019, and was still adjusting to campus life and the eating habits of college students. Colleen knew that with Type 1 diabetes, Nick had more to manage than the average 18-year-old. She feared that if he didn’t wake up soon and take some of the glucose gummies he kept by his bed, he’d fall into a coma, a serious concern for those with his disease. “I was panicked. …We were an hour away, and I didn’t know if Nick was even in his dorm room or someplace else,” she says. She called him several times but kept getting voicemail. “I was trying to make noise to wake him up.” Colleen turned to her husband, Larry, who also has Type 1 diabetes. Just keep trying, he said.

Finally, Nick picked up. He was eating the gummies and he was fine. He’d slept through the calls and the warnings on his phone, but his diabetes alert dog, Rainy, woke him. Nick had gotten Rainy the summer before his senior year at Our Lady of Good Counsel High School in Olney. He was fine with being “that guy with the service dog,” and his classmates adored Rainy and knew not to pet her when she was wearing her blue service dog vest. That predawn morning, when the dog’s usual nudges and licks didn’t jostle Nick awake, the 4-year-old yellow Labrador retriever started walking in circles on top of him. “It’s hard to sleep through a 60-pound dog standing on you while trying to keep her balance,” Nick says. “When I got up and checked my phone, I saw the alert and like 12 missed calls from my mom.”

Rainy is trained to jump up on Nick with her front paws if she detects a low blood sugar scent. Photo by Lindsey Max

Since the beginning of the pandemic, Nick, now 20, has been staying at his parents’ house in Darnestown and taking his classes from the sunporch, which he converted into what the family calls “Nick’s lab.” Before his college transitioned to online courses, the biochemistry major brought Rainy almost everywhere—except to the lab, because of the chemical odors, and band class because of the loud noises. He also avoided crowded gatherings so Rainy wouldn’t get stepped on. Luckily, he says, “I’m not a big party person.”

On a sunny afternoon in early January, Nick is out on the deck with his dad, Rainy and the family’s older diabetes alert dog, Clyde, a 95-pound goldendoodle they’ve had for nearly a decade. Clyde, who’s mostly retired, is napping. Colleen, who went back to work full time last year for an Annapolis-based nonprofit, is working virtually in the den. Rainy is sitting by Nick’s feet—she stays near him at all times—sniffing every few minutes for the scent he emits when his glucose level drops. She gets a treat and a lot of praise when she detects it and lets him know. On days when his levels fluctuate a lot—more than 40 factors can affect blood sugar in diabetes—she’ll alert him a half dozen times. Other days she may only do it once or twice. When Nick goes inside to get her service dog vest, Rainy runs to him. The vest means they’re going out and she has to be on her best behavior. She stands close to him so they can walk in lockstep, her tail still wagging.

Whenever the family is sitting on the couch and Nick, his dad or his 17-year-old sister, Katie—who was diagnosed with Type 1 diabetes in first grade—has a sudden drop in blood sugar, Rainy jumps up on whoever is giving off the scent. Clyde, who’s 12, will also alert them, though “he’s not as apt to jump up quickly when he smells something from across the room,” says Colleen, the only person in the family who doesn’t have diabetes. “He’ll still do it—he just moves more slowly. He doesn’t have the exuberance of youth.”

Nick, pictured at his family’s Darnestown home, brings Rainy almost everywhere. He hopes to be back on campus at Catholic University this fall. Photo by Lindsey Max

Colleen first heard about alert dogs in 2009, when she spent a week with Katie at MedStar Georgetown University Hospital in D.C. just after her diagnosis. In Type 1 diabetes, the pancreas stops producing insulin, a hormone that helps blood sugar get to the cells, where it can be used for energy. Without insulin, glucose builds up in the bloodstream and can cause health complications. Colleen needed to know how to manage her daughter’s disease—how to test blood sugar levels, which type of insulin to use and when. “I had to learn to give my child a shot—I’d never given a shot before,” she says. “It was traumatic and very sad.” One day at the hospital, an emotional support dog was making the rounds. “Someone said, ‘You know, they can train dogs to alert to low blood sugar,’ so I started researching.”

A few years later, Nick started showing signs of the disease, too. One night he kept heading to the bathroom while he and his dad watched the latest Harry Potter release. “When he got up just before the final scene, I said, ‘Dude, it’s the third time you’ve gotten up, and I’ve been watching how much you’ve been drinking. I’m going to have to check your blood sugar,’ ” Larry says. He waited to test Nick until after his wife had gone to bed—he didn’t want to worry her unnecessarily—but when he saw the reading, he woke Colleen and she drove Nick to the emergency room while he stayed with Katie. Nick’s blood sugar was nearly 600 milligrams per deciliter. For nondiabetics, the normal range is generally between 70 and 140.

Nick, then a fifth grader, says he’d known for weeks that he had diabetes—he was thirsty all the time and eating more than usual yet he wasn’t gaining weight. But he didn’t want to tell his parents. “I felt sad for them—it meant they would have two kids with diabetes,” he says. “I knew it would make my mom cry.”

After finding out about Katie, Colleen feared it was only a matter of time before Nick was diagnosed, despite doctors’ assurances that the odds were low, even with a father and sister who have the disease. According to Dr. Brynn Marks, an endocrinologist at Children’s National Hospital in D.C., a non-twin sibling of someone with Type 1 diabetes has roughly a 6% chance of getting it. A child has a 4% to 8% chance of developing Type 1 if a parent has it, so it’s “rare, but not unheard of,” Marks says, for a parent and two children to have the disease. While Type 2 diabetes is strongly tied to genetics, the exact cause of Type 1 is not fully understood. A popular theory, according to Marks, is that the disease is triggered by an autoimmune reaction to a virus that destroys the beta cells in the pancreas that make insulin. Though some people have a genetic propensity that makes them more likely to have that autoimmune response, many of those individuals won’t ever develop Type 1 diabetes. Unlike Type 2, which can be avoided or delayed with healthier eating and lifestyle changes, Type 1 isn’t caused by diet, and no one knows how to prevent it, according to the Centers for Disease Control and Prevention.

When Nick was diagnosed in 2012, Larry says his son “took it like a champ.” Both Nick and Katie, who’s now a senior at Stone Ridge School of the Sacred Heart in Bethesda, started attending Children with Diabetes’ annual Friends for Life conference in Orlando, Florida. They became active fundraisers for JDRF, formerly the Juvenile Diabetes Research Foundation. In high school, Nick served as a JDRF ambassador and spent a day on Capitol Hill speaking to members of Congress to help secure federal funding for Type 1 research.

For Colleen, Nick’s diagnosis was different than Katie’s. “I was still sad for Nick that his life would no longer be as carefree as before,” she says, “but I already knew I could manage it.”

When the kids were young, each carried a kit to school so they could test their blood sugar throughout the day. They never complained, Colleen says, “at least to me.” Every morning, she made sure the kits were loaded with snacks, test strips, insulin, syringes, finger prickers and Glucagon, an emergency medicine for extreme episodes of low blood sugar. She’d write down the carbohydrate counts for their lunches so the nurse would know how much insulin they’d have to take before they ate. These days, Colleen says, “We can all look at a plate of food and tell you about how many carbs it has in it.”

About 1.6 million Americans have Type 1 diabetes, according to the American Diabetes Association; Type 2 diabetes is far more common, affecting more than 32 million people in the U.S. Though some people with Type 2 are insulin-dependent, many produce enough insulin to manage the disease through diet, exercise and medication. Those with Type 1 require careful monitoring and regular insulin injections to keep glucose levels from staying elevated for long stretches of time. Years of improperly controlled high blood sugar can lead to heart attack, stroke, blindness, amputations and death.

“But it’s low blood sugar that scares parents the most,” Colleen says. “It’s the driving force behind getting the dog, because you can go from a normal blood sugar range to a dangerously low blood sugar range in a surprisingly short period of time.” For those with Type 1 diabetes, if low blood sugar isn’t dealt with right away—the Opacks’ go-to is a fun-size pack of Skittles—it can cause seizures and a loss of consciousness. Glucose dips also can be hard to detect, a condition known as hypoglycemia unawareness, which is especially worrisome at night. “When you are asleep, you can’t always feel your low blood sugar—the shaky, sweaty feeling you get that you can feel when you are awake,” she says.

Colleen’s introduction to Type 1 diabetes came when Larry was diagnosed at age 27, two months before the couple got engaged. At the time, he was working as a nurse in a private medical practice in Kensington and studying to be a certified diabetes educator. Larry’s father was diagnosed with Type 1 a few years before he was born. When Larry learned he had diabetes, he was able to get the disease under control quickly. “I knew my husband was living a great life with it, and it never affected anything we’d ever wanted to do,” Colleen, 53, says. “At the same time, the last thing you ever want to hear is that your child has an incurable, chronic disease. It’s terrifying—and then it’s a whole new normal.”

For the first several years after Katie and Nick were diagnosed, the only reliable way to monitor their blood sugar was by a finger prick. “I was up every three hours to check their levels,” says Colleen, who stopped working when Nick was born and decided not to go back after finding out Katie had diabetes. She bought special lighted eyeglasses so she could prick the kids’ fingers, squeeze the blood onto a test strip, feed it into a glucose meter, and see the results without waking them. When their levels were high, she’d give them a shot of insulin. When their levels were low, she’d have them swig down a juice box and then quickly rinse with mouthwash to get the sugar off their teeth. Then she’d tuck them back in and set her alarm for three hours later.

Larry, 55, will never forget the night he awoke at 2 a.m. to a wet dog nose pressed against his face at an airport hotel. It was 2012, and the family had flown to Texas a week earlier to pick up Clyde and meet the dog’s trainer, Bev Swartz, who’d had him since he was a puppy. They were spending their last night near the airport for an early flight home in the morning. Larry and Colleen were asleep, and the kids were in another room on a pullout sofa. “Clyde was supposed to be in the living room alerting to the kids, but instead he came into the bedroom and was waking me up,” says Larry, a government contracting consultant. “I thought the whole thing—getting this dog and all—was a mistake, but then Colleen said, ‘Why don’t you check your blood sugar?’ And it turns out it was low.”

When they got home and started bringing Clyde on errands, they learned that he could even detect low blood sugar in strangers. “One time, I was with the kids in line at the bank, and Clyde—who never barks—started barking and getting all antsy,” Colleen recalls. “The kids’ levels were fine, so I said to everyone in line, ‘If anyone here has diabetes, they may want to check their blood sugar.’ ” A woman in line rushed to the bathroom, came back and told Colleen, “It was me.”

A retired Navy medical technician, Swartz had been working with alert dogs for nearly 20 years when the Opacks contacted her. To be added to her two-year waiting list, the family had to submit four references and a letter from Katie’s doctor asserting that they were properly managing her disease. “If the doctors are saying [a patient’s] diabetes is going up and down like a yo-yo and it’s out of control, I question the attitude a bit,” Swartz, now 80, says. “The dogs don’t replace any medical equipment—they are just part of the plan.”

A year after they contacted her, Swartz sent photos of a new litter of puppies. “They lucked out with Clyde,” Swartz says. “He was easy to train.” Swartz kept Clyde with her for another nine months, letting him mature and master obedience. Then she asked the family to mail her T-shirts and washcloths that had Katie’s low blood sugar scent on them. She cut the items into strips and carried them around in her pockets in sealed bags. When she discreetly opened a bag and Clyde alerted to the smell, she’d reward him. She says alert dogs can also detect high blood sugar, but she concentrates on low blood sugar training because that’s “the immediate danger.”

Swartz trains no more than eight dogs a year and “practices” with them at Walmart, Home Depot, neighborhood restaurants and other public places to make sure the dogs will alert regardless of distractions and other scents. Since “a big dog pawing at a little kid could knock the kid right over,” she trains her dogs to nudge. Only when the dog alerts for low blood sugar with 85% to 95% accuracy—both at home and in public—does Swartz tell the family it’s time to come for their own training. Most families stay at a motel near her property for about a week before bringing the dog home. “Training the dogs is the easy part,” Swartz says. “It’s training the people that’s hard.”

Nick found out he had diabetes just weeks before the family got Clyde. He knew back then that he wanted to bring an alert dog with him to college. In middle school and high school, he spent a week every summer with Swartz to learn more about the training process. When it came time for him to get his own alert dog, Nick specifically requested a Labrador. Swartz found a breeder and trained Rainy. “You couldn’t ask for a better teenager to be around a dog than Nick,” she says. “Even when he was 11, he understood right away how and why the training works.”

A 2019 report out of the University of Bristol in England found that trained dogs alerted their owners to 83% of their low blood sugar episodes that occurred during the 12 weeks of the study. Nick says Rainy picks up on his drops in glucose 15 minutes ahead of the alert on his phone—the dog detects the subtle change in scent he emits just before his blood sugar level drops, while the alert doesn’t go off until after it happens. Nick says Rainy’s early warnings are particularly helpful before he takes an exam or a long car ride because he can fend off an episode before the symptoms kick in. “For the dogs, it’s the greatest game ever,” Colleen says. “They know when they alert, they get the best treats—whatever we’re cooking, they are going to get.”

In recent years, some trainers in the U.S. have been accused of selling expensive, poorly trained pets rather than reliable diabetes alert dogs. Insurance rarely covers the cost of the dogs—which may be as high as $25,000—and if they aren’t doing what they’re supposed to do, their owners have little recourse. Swartz says she’s fielded nearly two dozen calls from people who bought alert dogs elsewhere and want her to retrain them.

Today, Larry and the kids each have insulin pumps that work with the press of a button and reduce the need for injections. They also have CGMs, or continuous glucose monitors, that consist of a sensor under the skin that every five minutes checks their “interstitial glucose level” in the fluid between their cells. The sensor is attached to a transmitter that sends the data wirelessly to their cellphones. The kids’ CGMs also send the data to their parents’ phones. The sensors have to be periodically relocated to a different site on their abdomen or arm, but with the CGMs the Opacks rarely need to prick their fingers. When their glucose levels are high or low, their CGMs send an alert. Colleen programmed her phone’s alert to sound like an ambulance siren. “If we’d had two diabetes alert dogs when the kids were little, I’d have slept better,” she says.

On family trips, they bring a carry-on suitcase filled with diabetes supplies. During a vacation in Jamaica a few years ago, Nick, a scuba diver, got his certification in open water diving. “It’s not that I’m living my life completely different,” he says. “It’s just that I have to think ahead.” Each time he dives, he brings a doctor’s note saying he has clearance. The evening before he goes, he eats extra carbohydrates. Before going underwater he checks his levels in case he needs to make last-minute adjustments, and he brings a waterproof bag of fast-acting glucose for mid-dive low blood sugar emergencies. So far he hasn’t had to take any.

When classes start in August, Nick hopes to be living in a downtown D.C. apartment with some buddies, including a young woman with Type 1 diabetes whose mom is excited that her daughter will have Rainy around. “When I’m with my friend group and we’re all sitting around together, [Rainy] will go around and sniff everyone and then come back and sit at my feet,” Nick says. “They all think it’s so great that she’s looking out for them, but it’s really that she knows if she finds the low blood sugar, she’ll get a treat.”

“She’s invaluable,” Colleen says of the dog. “I don’t need Nick to have a roommate or campus security—I need him to have Rainy.”

Katie won’t be bringing an alert dog to college in the fall. “It’s a lot of responsibility,” Swartz says, “and not everyone wants to commit to taking a service dog with them everywhere they go.” It’s the overnight hours that worry her mom most. “I’ll probably want her to check in with me every morning,” Colleen says. “I’ll want her to send me a quick text with a thumbs up so I’ll know she’s on it.”

Amy Halpern is a journalist who has worked in print and television news, and as the associate producer of an Emmy award-winning documentary. She lives in Potomac.