“We just thought he had a stomach bug,” Rebecca Cook recalls, thinking back to the day two years ago when her only child, 10-month-old Theo, became ill. “He was throwing up, seemed really thirsty and was peeing a lot.” But then Theo took a turn for the worse. “He started doing this strange breathing pattern and he was actually borderline unconscious.”
Cook and her husband called the public health nurse who got an ambulance to bring their limp, non-responsive son to Janeway Children’s Health & Rehabilitation Centre ER in St. John’s. A blood test conducted by the paramedics revealed that Theo had type 1 diabetes. His extreme thirst and vomiting were classic signs of the disease, which can also include symptoms such as extreme tiredness, frequent urination and sudden weight loss despite constant hunger.
“We were shocked,” Cook says. “It all happened so fast. In a matter of 24 hours, we went from thinking he had a stomach bug to realizing he has a lifelong illness.”
Diabetes occurs when the body is unable to produce or respond to insulin, the hormone that is produced by the pancreas and is needed to convert glucose (sugar) into energy. In type 1, the immune system destroys the cells that make insulin, causing insulin production to cease, explains Diane Wherrett, a paediatric endocrinologist at Toronto’s Hospital for Sick Children. With type 2 diabetes, the pancreas continues to produce insulin, but for reasons we don’t completely understand, the body doesn’t respond to it.
If left untreated, both illnesses cause glucose to build up in the bloodstream, which damages blood vessels, leading to complications such as heart disease, blindness and nerve damage. Prior to the discovery of insulin, most type 1 diabetics died within months of developing the illness. But today, Wherrett says, “With well-managed diabetes, the prospect of a long and healthy life is excellent.”
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Prior to her son’s diagnosis, Cook admits that she knew little about type 1 diabetes. The week after the diagnosis, while Theo was stabilized in the hospital, she and her husband were given a crash-course in how to give insulin injections, how to check their son’s blood sugar and how to watch for signs that it was too high or low.
The rise in type 1 diabetes
While Theo, now three, developed the disease at an unusually young age, his diagnosis is not rare. According to Diabetes Canada, an estimated 36,000 Canadians under 20 have the disorder, a figure that Munier Nour, a paediatric endocrinologist at the University of Saskatchewan, says is steadily rising. Studies have found that type 1 diabetes has been increasing by one to five percent every year in Canada. JDRF, a research funding organization that aims to bring an end to type 1 diabetes, reports that globally, the disease has been doubling in incidence about every 20 years, and that Canada has the sixth-highest incidence in children 14 years and younger.
There’s currently no agreed upon reason for why this increase is happening, says Nour. Because northern countries have the highest rates of the disease, some experts suspect there is a connection with a lack of vitamin D. Another theory, called the hygiene hypothesis, suggests that reduced exposure to germs may be to blame. Nour explains that rates of type 1 diabetes are highest in developed nations, where children are exposed to fewer of the microbes that some suspect are needed to develop a healthy immune system. “The theory is that living in a sterile environment may lead to more autoimmune conditions such as type 1,” says Nour. And there does seem to be a genetic link. “About 15 percent of people who have type 1 have a family member who has type 1,” says Wherrett.
Type 2 diabetes is also on the rise in kids. Nour says that, 20 years ago, it was almost unheard of in children, but a 2010 study found that there are 1.54 cases of type 2 diabetes per 100,000 Canadian kids. “That increase is largely the result of the obesity epidemic,” says Nour, explaining that being overweight is a key trigger for the illness.
Type 1 diabetes may not have a cure, but it does have a proven treatment: injections of synthetic insulin that are usually administered three or more times a day. Unfortunately, insulin and other necessary supplies such as blood sugar testing strips aren’t cheap. According to Diabetes Canada, those items can run someone without private health insurance more than $5,000 a year. About 70 percent of Theo’s diabetes-related expenses are covered by Cook’s workplace health insurance. She considers herself lucky to have that coverage. Some families struggle to pay for diabetic supplies out of pocket. While some financial assistance is available, it varies greatly across the country and isn’t comprehensive. For example, some provinces might cover the cost of insulin for low-income families, but not the cost of the needles needed to inject it.
Currently, Theo receives four injections a day—two in the morning, one at dinner and one before bed. Until recently, receiving those needles didn’t faze him, but that’s changing. “Lately, he’s started to really hate the injections,” says Cook, who believes that as Theo grows up he is becoming more aware of his body and feelings. “Now he’s like, ‘No mommy. Hurts.’”
Theo’s growing complaints about injections has Cook seriously considering switching to an insulin pump in the next 12 to 18 months. Worn under clothing, this small device delivers insulin to the body via a thin tube placed under the skin, usually in the abdomen, eliminating the need for needles. While expensive, all provincial and territorial healthcare plans cover insulin pumps, though some regions cap the amount of funding or restrict it to individuals who meet specific criteria.
“We use insulin pumps for all ages, though often the age of switching to a pump is when a child is more independent in their ability to operate it,” says Wherrett. That way, children can tell the pump how much carbohydrates they are consuming so the pump can use that information, along with their blood sugar, to calculate the dose of insulin required. To help make the math a little easier, Wherrett says, “Parents will label their child’s lunch with things like, ‘Your sandwich is 30 grams of carbohydrates.’”
Parents of kids with diabetes also need to keep a close eye on blood sugar, which is done by pricking a finger to test a drop of blood with specialized strips and a meter before every insulin dose and sometimes more often. Because of Theo’s young age and his unpredictable eating habits, the Cooks must check his blood every four or five hours—even during the night.
While injections and finger pricks can be painful, getting kids to eat properly and monitor their carbohydrate consumption are the bigger challenges for many parents, particularly as kids become more independent. “Parents will come in and say, ‘My child is sneaking candy,’” recounts Wherrett. She explains that, contrary to popular belief, kids with type 1 diabetes can eat ice cream, birthday cake and other sugary foods. “They just need to know how much carbohydrates are in the treat and make sure that they’ve taken enough insulin.”
Tasks such as counting carbs mean that if Theo were to attend daycare, he would require his own dedicated worker. Cook, who is an HR consultant, ended up putting her plans to return to work full-time on hold and instead now works a part-time schedule. Three days a week, her parents, who have been trained in diabetes management, watch Theo.
Even though school is still a couple of years away for Theo, Cook has already started reaching out to local schools in an effort to find one that has experience with diabetic students. Once they choose one, a diabetes educator or public health nurse will teach relevant staff about how Theo’s illness should be managed and create a personalized diabetes management and emergency plan—a practice that’s mandated in several provinces. Some parents choose to (or are forced to) homeschool their child with type 1 diabetes.
While Cook realizes that Theo’s diagnosis has the potential to lead to serious health problems, she prefers to focus on the present. “We try not to dwell too much on the negative things or even what the challenges are,” she says. “We really just move forward with each day as a new day.”
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