More Kids Are Being Diagnosed With Type 1 Diabetes—Here's What Parents Need to Know

In the early 1900s, children died from Type 1 diabetes. They stayed in large hospital wards, sometimes with more than 50 patients and grieving family members.

That changed in 1922. In a dramatic moment in medical history, three of the scientists who worked on the discovery and purification of insulin, Sir Frederick G. Banting, Charles H. Best, and James B. Collip walked through a ward where 50 children lay comatose. One by one, they injected them with insulin. They all woke up from their diabetic comas.

It was a breakthrough moment for medicine.

"One hundred years seems like a long time ago, but personally, my grandparents were alive before insulin was discovered," says Graeme R. Frank, M.D., a pediatric endocrinologist with Northwell Health in New York. "In those days, if you developed diabetes, it was a death sentence."

It's not anymore. Today, children diagnosed with Type 1 diabetes can lead relatively normal lives. That's the good news. The unfortunate news is that Type 1 diabetes is on the rise in the United States. According to the Centers for Disease Control and Prevention (CDC), 1.6 million people had Type 1 diabetes in 2020, up from 1.25 million people in 2017—that's a 30 percent increase. Black and Latinx children under the age of 20 saw a 20 percent rise, the steepest of any group, while white children represented the slowest-growing demographic with a 14 percent increase in cases.

Type 1 diabetes is usually diagnosed in children, teens, and young adults, though the CDC says it can develop at any age.

The problem is that it's easy to miss the symptoms of Type 1 diabetes. Left untreated, diabetes can lead to hospitalization and even death. A pair of experts explain everything parents need to know about the disease.

• RELATED: Our First Year With Diabetes

The Difference Between Type 1 and Type 2 Diabetes

Researchers know what's going on in the body of a person with Type 1 diabetes. The human body need insulin, and those with Type 1 do not produce it, a difference from Type 2 diabetes.

"Type 1 diabetes is an absolute deficiency of insulin," says Dr. Frank. "People with Type 2 make insulin, but it doesn't work so well."

Without insulin, blood sugar cannot enter the cells to be used for energy. Instead, it builds up in the bloodstream. But there isn't any definitive research on what causes Type 1 diabetes. Because of this, they can't pinpoint exactly why Type 1 diabetes is rising.

Type 1 Diabetes Causes

Genetics may play a role in the development of Type 1 diabetes, but it's not a panacea. Identical twins share the same set of DNA. However, one can have Type 1 diabetes, and the other may never develop it. At most, only half of identical twins both share the disease, according to the American Diabetes Association. "That shows us there is an environmental component," says Dr. Frank. "Otherwise, 100 percent of identical twins would develop Type 1 diabetes."

But the environmental triggers are still unknown, and research has produced conflicting results. For example, according to one study, breastfed babies may be less likely to develop Type 1 diabetes. However, other research says the data is too weak to say for sure. A 2018 study refuted another report from 2010 that infants fed cow's milk formula were more susceptible to Type 1 diabetes than those who consumed formula which contained broken-down milk proteins.

"The data that has come out has been pretty contradictory, so there's not enough for us to make a recommendation," says Priya Prahalad, M.D., a California-based clinical assistant professor with Stanford Children's Health.

Type 1 Diabetes Symptoms

Without a known trigger, it's difficult to advise parents on prevention and mitigation efforts. Instead, doctors recommend looking out for symptoms, as early detection can help prevent issues like diabetic ketoacidosis, a life-threatening diabetes complication when the body produces high levels of blood acids known as ketones.

Dr. Frank points to a U.K. campaign that asks parents to be on the lookout for the 4Ts of Type 1 diabetes as a helpful place to start. They are:

• Thirst
• Toilet (more frequent urination, wetter diapers, bed-wetting in a previously potty-trained child)
• Thinness
• Tiredness

"Every single child is going to have the same symptoms," says Dr. Frank. "When your blood sugar is high, it comes out in the urine. You pee a lot, and as a result, you drink a lot. "

Because blood sugar is coming out in the urine, people with Type 1 diabetes are essentially flushing the carbohydrates their bodies need for energy down the toilet, adds Dr. Frank. That causes fatigue. Though diabetes is often associated with obesity, frequent elimination can actually lead to weight loss.

The problem is that children are less likely to complain about symptoms. As a result, Type 1 diabetes may only get diagnosed after a child develops ketoacidosis, which occurs when the body doesn't have enough insulin. Ketoacidosis can cause diabetic comas, kidney problems, brain swelling, developmental delays, and even death.

Getting a Type 1 Diabetes Diagnosis

Dr. Prahalad and Dr. Frank both advise parents who suspect their child has Type 1 diabetes to speak with their primary care physician first.

Doctors can perform a urine screen to test for glucose or ketones. They may also test blood sugar levels by pricking a child's finger and using a glucometer or referring parents to a lab to have blood drawn.

"If there is any abnormality, depending on where you are, they can reach out to a pediatric endocrinologist or direct the family to an emergency room," says Dr. Prahalad.

Type 1 Diabetes Treatment

Type 1 diabetes is not curable, but it is treatable. "The only treatment is insulin administration, and currently, the only way to get insulin is through injections in one form or another," says Dr. Prahalad.

In years past, that often meant pricking a child's finger to check blood sugar six to 10 times per day (before meals and at bedtime). Parents or children would also have to inject insulin multiple times per day to meet the child's basic insulin needs, bring down high blood sugars, and cover the carbohydrates in food.

There's no way around it: it was a lot. "The care of diabetes can be challenging for kids and their families, but there have been quite a few technological advances that have made care easier," says Dr. Prahalad.

These are two of the main advances and tools available to parents and their children when managing Type 1 diabetes:

• Continuous glucose monitors. "These are small, wearable devices that measure glucose every five to 15 minutes," explains Dr. Prahalad. It negates the need for constant finger pokes, and children can keep it on for about two weeks (there's one for adults that lasts six months). If linked to a cloud, parents can see their child's numbers on their phone at any time.
• Insulin pumps. Insulin pumps allow people to receive insulin through a small catheter placed under the skin. "This is a big change from getting four to five insulin shots per day," shares Dr. Prahalad. It does require some intervention, though. "The user enters a blood sugar and how many grams of carbs they eat," says Dr. Prahalad. "The pump does the math and will give the insulin."

Living and Coping With Type 1 Diabetes

Even with new technology, a child's diagnosis can feel overwhelming to parents and children. "It is a huge life change," says Dr. Prahalad.

Dr. Prahalad says no food or drinks are typically off-limits except juice and soda, but having to think about how many grams of carbs are in food and inputting it into a pump or giving a shot can be hard for parents and children. But experts stress children with Type 1 diabetes can lead healthy lives.

"As long as their child is taking insulin and doing the necessary steps to keep glucose in range, the child can do anything a child without diabetes can do," says Dr. Prahalad, pointing to Robin Arzón, a Type 1 diabetic and popular Peloton instructor who recently had a baby.

If you or your child are struggling emotionally, help is available. Here are a few tips and resources.

• See a social worker or mental health professional. At Dr. Frank's practice in New York, social workers help families adjust to the diagnosis. You can also ask for a referral to see a mental health professional to talk through your feelings, or so your child can.
• Educators. Carb counting, blood sugar checks, and insulin administration may feel complicated, particularly at first. Dr. Frank says nurse educators and nutritionists can help walk families through each step.
• Advocacy groups. Nonprofits like JDRF and Beyond Type 1 provide education and resources for children with diabetes and their families. "Families can see other people with diabetes and connect with other families," says Dr. Prahalad.