My child has type 1 diabetes. Now what?
Emmet’s blood glucose, or blood sugar, was higher than the meter’s maximum of 600 mg/dL. Normal levels for a non-diabetic child fall between 70 and 140 mg/dL.
Life is full of ups and downs. The latest article in our series called “Now What?” explains what happens if your child is diagnosed with type 1 diabetes.
Maybe you first thought something could be wrong when your son drank five glasses of water in a row. Or your daughter, who hadn’t wet the bed in years, started having accidents every night. Maybe your normally active child started taking long naps, or maybe they were losing weight in spite of eating more than ever.
Diabetes is the name for chronic conditions that affect how the body converts food to energy. Our bodies rely mainly on glucose for energy, and the hormone insulin escorts it into the cells and tissues where it is used. The condition known as type 1 diabetes occurs when the body destroys the pancreatic cells that make insulin. Type 2 diabetes occurs when the pancreas stops making insulin due to prolonged stress. Although an increasing number of teens are diagnosed with type 2 diabetes, this article will deal with type 1, which can strike at any age and affects more than 187,000 children and youth in the United States. Type 1 diabetes is also called juvenile or insulin-dependent and may be shortened to T1D or simply T1.
Thirsty and Soaking Wet
At Emmet’s two-year well-child visit, he finished two sippy cups of water and peed through his diaper and clothes, but the pediatrician was not concerned. His mother, Gwen, says after the doctor visit, Emmet took a four-hour nap. Even though he hadn’t had any water since 1:00 PM, he peed through his diaper and soaked his clothes again by the time he woke up at 5:00 PM.
Gwen is diabetic and had a blood glucose meter on hand, so she checked him. Instead of telling her a number, the meter simply said HIGH. Emmet’s blood glucose, or blood sugar, was higher than the meter’s maximum of 600 mg/dL. Normal levels for a non-diabetic child fall between 70 and 140 mg/dL.
Gwen knew Emmet could be in serious danger. She and her husband don’t drive, so she called her parents and loaded Emmet and his six-month-old brother into her parents’ car and took off for the nearest hospital.
The doctors quickly evaluated Emmet and confirmed Gwen’s suspicion that he most likely had type 1 diabetes. They referred the family to the nearest pediatric hospital, a 90-minute drive from their home in New Brunswick, Canada. Emmet was admitted to the hospital on a Tuesday. Four days later, with an official diagnosis and knowledge about managing his condition gained from the diabetes educator, Gwen took him home.
The Highs and Lows of Type 1 Diabetes
Even though Gwen has type 1 diabetes herself, she had a lot to learn about managing a young child’s blood sugar levels.
She learned that it’s better for young children to have slightly higher, rather than lower, blood glucose levels because the brain requires glucose to function. Chronically low blood sugar can cause seizures or lasting injury to a child’s growing brain. High blood sugar poses risks to other organs, but with proper management those risks can be tempered.
Now three years old, Emmet can be a picky eater, but Gwen has to balance his nutritional needs with his blood glucose levels and give him the freedom to choose.
When she was a child growing up with type 1 diabetes, she had little control over what she ate, and she hated it. “I was on a strict meal plan,” she remembers. “I was forced to eat my food because I already had the insulin in me.” The amount of insulin administered was based on what Gwen’s parents expected her to eat at a meal. If she didn’t eat all her food, her blood sugar levels could become out of balance.
When she got older she learned how to count carbohydrates and calculate her insulin accordingly. She wants Emmet to have that freedom too. “I want Emmet to know he can eat whatever he wants, he just has to take insulin for it. He’ll learn that if he doesn’t, he won’t feel right.”
Monitoring Emmet’s blood sugar has become easier since he began using a continuous glucose monitor. Now he doesn’t need to have his finger pricked to produce a sample for a traditional blood glucose meter using test strips.
He has also gotten used to getting insulin injections. At first, Gwen says, she and her husband had to hold him down to inject him. But eventually he asked to get the shots in his abdomen, like his mom does, and began to accept them stoically.
About Type 1 Diabetes
Type 1 diabetes is an autoimmune disease in which the immune system destroys healthy pancreatic tissue. When the pancreas can no longer produce insulin, the cells and tissues that need energy can no longer absorb the sugars in food. The concentration of sugar, or glucose, in the blood rises and causes symptoms such as nausea, vomiting, fainting, excessive thirst and urination, extreme hunger, and unexplained weight loss.
No one knows what causes type 1 diabetes, but research suggests a genetic link. Managing the condition requires careful tracking of blood sugar levels throughout the day and supplying insulin either through injection or a wearable pump. Experts recommend that children with diabetes eat a healthy diet and get plenty of exercise, in addition to being followed by an endocrinologist and periodically having a blood test called A1C, which measures how well blood sugar levels are being controlled over time.
Swings in blood sugar can be dangerous. Hypoglycemia, or low blood sugar, can cause clumsiness, dizziness, sweating, shaking, and irritability. Extremely low blood sugar can lead to convulsions, coma, or death.
Hyperglycemia, or high blood sugar, also known as sugar shock, can cause blurred vision, stomach aches, and fatigue. Prolonged high blood sugar can lead to diabetic ketoacidosis, with a telltale fruity smell on the breath, which can cause acute kidney failure. Signs of extremely low or high blood sugar should be treated as a medical emergency.
Untreated diabetes can lead to heart disease, stroke, damage to the kidneys, vision loss, and even amputations. However, by following an endocrinologist’s recommendations, working with a diabetes educator, and paying close attention to what works for your child, you and your child can become skilled at managing diabetes. Most people with type 1 diabetes live long and healthy lives.
Advice to Parents
Gwen recommends that wherever possible, parents connect with local groups for type 1 diabetes. Virtual groups are good, she says, but online misinformation about the condition is everywhere.
“I would rather talk to five people that have been through it than read something online that has no factual basis,” she says.
Other parents will also be able to tell you what is normal, like how difficult potty training can be for kids with type 1 diabetes because elevated blood sugar leads to increased thirst and urination.
If parents suspect their child might have type 1 diabetes, Gwen says not to accept reassurances from doctors who haven’t tested their child.
“A lot of doctors will say, ‘He’s only peeing and drinking,’” she says. “I had to say, ‘No, it’s peeing, drinking, a big burst of energy followed by sleep for three hours, and sweet smelling breath.’ Peeing and drinking is a toddler thing, but soaking a diaper after drinking four cups of water isn’t normal.”
She says parents have to advocate for their children and trust that they have a more complete picture of their child’s health than any doctor. “You have to trust your gut feeling when you know something is wrong,” she says.
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Centers for Disease Control and Prevention, “Diabetes Basics,” [n.d.]
Cleveland Clinic, “Type 1 Diabetes in Children: Management and Treatment,” 
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JDRF, “Blood Sugar Symptoms and Diabetes,” [n.d.]
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Centers for Disease Control and Prevention: Type 1 Diabetes
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Martinez, Juliet B., “My Child Was Diagnosed with Autism. Now What?” 2020
Martinez, Juliet B., “My Child Was Diagnosed with OCD. Now What?” 2020
Martinez, Juliet B., “Our Family Pet Died. Now What?” 2020