How to Care for Children With Type 1 Diabetes

Caring for a child with type 1 diabetes can be challenging, exhausting, stressful, and scary. As a parent or caregiver, you are tasked with learning how to manage your child’s blood sugar and avoid highs and lows to keep them healthy and safe. At the same time, you have to guide their growing independence, giving them the confidence and know-how to flourish as teens and adults with type 1 diabetes.

Type 1 diabetes is an autoimmune disease in which the immune system attacks and destroys the cells in the pancreas that produce the hormone insulin, causing blood sugar concentrations to rise to dangerous levels. People with type 1 diabetes must administer insulin as a medication in order to keep their blood sugar level within a safe range.

This complex condition, which requires frequent attention and periodic adjustments, can be very stressful. Insulin also carries a risk of low blood sugar (hypoglycemia), so all family members should be aware of warning signs and how to help in an emergency.

“It’s important to acknowledge that [a type 1 diabetes diagnosis] will be life-changing for the entire family,” says Celina Trujillo, MPH, NP, an assistant professor and pediatric nurse practitioner at the University of California in San Francisco.

A type 1 diabetes diagnosis can feel scary, but your child’s future is still bright. Type 1 diabetes doesn't have to limit a child’s participation in school, sports, or sleepovers, and new technology has made it easier than ever to manage the condition, even when you’re far away from your kid. Nevertheless, helping your child thrive does require daily vigilance and a constructive attitude.

When a child has type 1 diabetes, parents and other caregivers may need to take on most or all of the responsibility of managing their blood sugar levels. The younger a child is, the more help they’ll need.

The ultimate goal of type 1 diabetes management is to keep blood sugar within a safe range — neither too high nor too low. This reduces the risk of both short-term and long-term health problems.

But this is easier said than done. With every snack or meal a child eats, and every time they run or play, their blood sugar will go up or down, often very unpredictably. “Even in a healthy body,” says Stephen W. Ponder, MD, CDCES, a pediatric endocrinologist with Baylor Scott & White Healthcare in Temple, Texas, “blood sugar levels are not a flat line. [The blood] is reacting and responding to many factors [throughout the] day. It’s a very complex system.”

It is your job as a caregiver to juggle food, insulin, exercise, and other factors, such as stress and illness, to keep blood sugar levels steady and in range. To do this, caregivers must constantly be anticipating and adjusting. This will become a process of continuous learning in which you try your best, see how it works, consult with your child’s doctor or diabetes educator, and try again.

Don’t expect perfection. “Remember to ask yourself: What is the goal for your child? The goal is to live a normal life,” says Dr. Ponder. “There is a big difference between control and management. In type 1, we are trying to manage blood glucose levels; we cannot control them.”

Checking your child’s blood glucose levels with a glucose meter or continuous glucose monitor (CGM) is a critical part of their daily safety and long-term well-being.

• Traditional glucose meters require a drop of blood, which is drawn with a prick on the fingertip from a sharp lancet. These devices provide an accurate blood sugar measurement, but do not show trends over time or offer a complete view of how blood sugar levels fluctuate. They must be used multiple times per day.
• Continuous glucose monitors (CGMs) attach to the body for about two weeks at a time via a thin wire-like sensor that is painlessly inserted underneath the skin. A CGM automatically takes new glucose measurements at least every five minutes and sends them to a dedicated receiver or a smartphone app. This app shows all the blood sugar data and will sound alarms when blood sugar is rapidly falling or rising so you can quickly take corrective measures.

This data will be essential for managing your child’s condition, but it’s also important for your child’s growing awareness of their own condition. Trujillo says that your very first goal as a parent is helping your child develop a positive relationship with the numbers they see every day on their glucose meter or CGM.

Ponder says thriving with type 1 diabetes starts with learning how to handle high and low blood sugars without losing patience or getting discouraged: “You can’t change the waves but you can learn how to surf.”

Insulin is an especially tricky medication to use, because the amount of insulin a person needs varies from moment to moment and day to day, and too much or too little quickly results in side effects. As a caregiver, it may be your job to decide how much insulin to use, as often as several times a day. Your child’s medical team will guide you on how to start and how to adjust to your child’s changing circumstances.

Modern insulin comes in two different forms:

• Basal insulin, also known as long-acting or background insulin, activates slowly and steadily, mimicking the pancreas’ natural tendency to slowly release insulin around the clock.
• Bolus insulin, also known as rapid-acting or mealtime insulin, works more quickly and powerfully, and is most often used before snacks and meals.

Today there are many insulin delivery options for children with type 1 diabetes.

• Insulin vials store the medicine in a glass container for use with a syringe.
• Insulin “pens,” a more user-friendly option, are prefilled devices shaped like a pen that are filled with insulin; the user attaches a disposable needle tip and administers the dose with the push of a button.
• Insulin pumps are electronic devices that stick to the body and administer tiny, precise doses of insulin continuously, 24 hours a day, to keep glucose levels steady. Users can order larger bolus doses before meals or to correct markedly elevated glucose levels. People using an insulin pump need a prescription only for rapid-acting insulin, as the pump can administer rapid-acting insulin in both basal and bolus doses.

Insulin pumps may be especially appropriate for children who are ready to start determining their own mealtime insulin doses, but who are not ready to be handling needles.

Your child’s healthcare provider will give you blood sugar management goals to shoot for.

• A1C, which is assessed by a blood test given at a doctor’s office, is a measurement of average blood sugar levels over the previous several months. Diabetes authorities currently recommend targeting an A1C level of less than 7.0 percent, though less strict targets may be appropriate for some children, such as those who cannot sense or articulate when they’re experiencing hypoglycemia.

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• Time-in-range is a newer statistic collected by CGMs that measures how much time is spent within your target blood sugar range. Children are usually recommended to spend a minimum of 60 to 70 percent of their day between 70 and 180 milligrams per deciliter (mg/dL).

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Meeting your child’s blood sugar targets will help guard their long-term health against the complications of diabetes, such as kidney disease, nerve damage (neuropathy), and vision loss (diabetic retinopathy).

You can learn how to talk about these blood sugar numbers as a family to help your child develop a healthy relationship with type 1 diabetes. “Do not punish your child for their blood sugar levels,” says Ponder. “The child should never be judged for their numbers. I’ve heard stories of children being disciplined for their blood sugar levels. This will not help. This will simply lead the child to lying and making up numbers.”

“There are no good or bad blood sugars,” says Ponder. “Your child will be making an infinite number of choices every single day that impact blood sugar levels. It is a constant process to manage something the pancreas should manage for them.”

“You want to create the most open and nonjudgmental approach possible,” says Ponder. “Do not let fear frame how you or your child sees diabetes.”

Everyone with type 1 diabetes will regularly encounter both low blood sugar (hypoglycemia) and high blood sugar (hyperglycemia). Each of these conditions can quickly progress to a severe and dangerous state, so it is important for caregivers to know the warning signs and be prepared to act in an emergency.

Hypoglycemia

Hypoglycemia is the most common short-term risk for anyone living with type 1 diabetes. Every caregiver of a child with type 1 diabetes must be ready to treat hypoglycemia at all times. Everyone with type 1 diabetes will experience hypoglycemia — usually defined as a blood sugar level below 70 mg/dL — from time to time.

Fast-acting carbohydrates include sources of refined sugar such as glucose tabs, juice, and jelly beans. These are the best snacks for increasing blood sugar levels quickly.

Teens and adults with type 1 diabetes are often able to sense and treat hypoglycemia by themselves. Common symptoms include:

• Lightheadedness
• Confusion
• Sweating
• Dizziness
• Hunger

But these warning signs are not necessarily reliable, especially for younger children, who may be less in touch with body cues or less able (or willing) to communicate with adults. Every child’s ability to feel their lows can vary from one day to the next, says Trujillo, and caregivers should be on the lookout for altered behavior that might indicate low blood sugar levels.

Preparation for hypoglycemia is important for everyone who cares for your child. You and your child should stash sources of fast-acting carbohydrates everywhere your child spends time — at home, in your car, next to their bed, in their backpack, and in their classroom.

A CGM offers enhanced protection from hypoglycemia by sounding an alert on your smartphone when your child’s blood sugar begins to drop. This feature is especially useful for children who experience blood sugar drops overnight, when their caregivers are sleeping.

Severe Hypoglycemia

Your child’s healthcare team should write you a prescription for emergency glucagon rescue medication, which can quickly raise the blood sugar level of a person who is unable to eat or drink during hypoglycemia. Glucagon is a natural hormone that tells the liver to quickly release stored sugar into the bloodstream.

If your child is experiencing severe hypoglycemia and you have glucagon rescue medication, you should use it as soon as possible, and then immediately call a doctor for emergency medical treatment.

Severe Hyperglycemia

Moderately elevated blood sugar levels can make your child feel sluggish or irritable, but they do not usually present an immediate danger. It is nevertheless still important to do what you can to help bring your child’s blood sugar down to their target range, typically using exercise or correction doses of insulin.

Severely high blood sugar levels, however, can advance to a dangerous state, especially when triggered by insulin pump failures, forgetting or skipping insulin doses, or illness.

• Blood sugar that will not fall below 300 mg/dL
• Elevated ketones
• Fruity breath, a sign of ketones
• Inability to eat or drink, or inability to keep food or water down because they are vomiting
• Difficulty breathing
• Other symptoms of DKA, such as excessive thirst and frequent urination

Type 1 diabetes affects every part of your child’s life. Here are a few things your family will need to pay close attention to.

Food and Type 1 Diabetes

Type 1 diabetes will affect practically every eating decision your child will ever make. Adults with the condition learn to consider the blood sugar impact of every snack, drink, and meal. Doing so is critical to healthy blood sugar management.

You will have to focus most of your attention on carbohydrates, the component of food that spikes blood sugar the most. People with type 1 diabetes learn how to count carbs, and your child’s healthcare team should help you establish an “insulin-to-carbohydrate” ratio that helps you estimate insulin doses. For example, a ratio might be 1:15, which means a person needs 1 unit of rapid-acting insulin for every 15 g of carbohydrates.

“Helping parents get away from the idea of ‘you should not be eating that’ is critical,” says Trujillo. “We don’t want to be restrictive with food because it makes kids want to sneak those foods, often without insulin. [We prefer] shifting the conversation toward eating a well-balanced diet, taking insulin, and aiming for healthier options.”

Managing your child’s diet can be one of the most stressful parts of family life with diabetes. Picky eaters may have a strong preference for simple starches like plain pasta or white bread. Siblings may get jealous if only one child has a special diet, or if non-diabetic siblings are also forced to limit their carbohydrates. Events full of sweet treats, like holidays and birthday parties, can feel like minefields. Every family will need to find a balance between prioritizing healthy food and letting their child feel “normal.”

Exercise and Type 1 Diabetes

Exercise, in fact, has an extremely complex effect on blood sugar.

• Aerobic exercise (such as running, soccer, and playing tag) generally causes blood sugar levels to drop quickly.
• Anaerobic exercise (such as weight-lifting and sprinting) can cause a rise or fall in blood sugar.
• Adrenaline, a hormone produced in response to stress or excitement, can also cause blood sugar spikes.

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• Any type of exercise can increase sensitivity to insulin over the next day, reducing insulin requirements.

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At the same time, many other variables will affect your child’s blood sugar during exercise, particularly the number of carbohydrates they have eaten recently and the amount of insulin active in their system.

Learning to manage all these factors takes careful experimentation. To prevent your child’s blood sugar from dropping in the middle of exercise, your child may need a snack, a sip from a sports drink, or less insulin during meals before they plan to exercise. There is no one-size-fits-all approach to insulin and carb management during exercise with type 1 diabetes.

You can’t always be with your child. How can you be sure that they’ll be safe? Learning how to let others watch over your child is a necessary but daunting part of being a parent of a child with type 1 diabetes.

School and Summer Camp

A DMMP will explain your child’s daily needs and routine, and describe how much help they need from the school nurse and other staff. Younger children may need to visit the nurse’s office for insulin administration before snacks and meals, and may require help checking their blood sugar. Older children can be more independent, but will still benefit from the school’s cooperation in their diabetes care. Your DMMP will also allow the school to craft a Section 504 Plan or Individualized Education Program (IEP), if necessary.

Because exercise can have such a dramatic effect on blood sugar, it may be wise to personally meet with your child’s coaches and gym teachers to be sure that they understand how to watch out for and treat hypoglycemia. Coaches should also be aware that your child may absolutely need to take a break from practice to treat a blood sugar low, no matter the situation.

You should update your DMMP annually, or more frequently if your child’s treatment changes. Summer camps may be able to offer similar resources to help your child manage their condition while they’re away from you.

Babysitters and Sleepovers

Leaving your child with a babysitter or with other adults during a sleepover can be especially nerve-racking.

Everyone involved in the care of your child should be aware of the risk of hypoglycemia, and how to respond in the case of a severe hypoglycemic episode. Here are some other things you may need to review with a new caregiver:

• Does your child eat a special diet? Do they have limits to the number of carbohydrates they can have?
• How high do you allow your child’s blood sugar to get before treating it with insulin?
• How and when does your child dose insulin for meals?
• Are backup test strips, CGM sensors, or insulin pump supplies available?
• Have you trained your babysitter on the use of glucagon rescue medication?

A CGM’s remote monitoring feature allows you to watch your child’s blood sugar levels even when you’re out on a date or out of town. It’s a good idea to stay as available as possible while you’re away; you can expect babysitters to have questions when something unexpected happens.

As your child approaches adolescence, your role in their type 1 diabetes management will need to change.

“As the child gets older, they will be spending more time away from Mom and Dad,” says Trujillo. “And you won’t be able to control or manage everything they put in their bodies. Your goal will be to gradually give them the skills and tools they need to manage their diabetes in those situations. And your role as the parent is to remember that they won’t do it perfectly, and that’s okay.”

Over a period of years, your child will slowly need to learn how to manage their own condition: how to test blood sugar, how to dose insulin, how to correct hypoglycemia, and how to plan meals and exercise.

Children are not all ready to take on these responsibilities at the same age, says Ponder: “As the parent, you need to nurture the child, give them more responsibility gradually, let them make mistakes without being punished or shamed, and consider their emotional maturity and relationship with their diabetes.”

There will probably be many difficult moments as you and your child disagree on how much independence they should have to manage their own condition.

As they approach the late teen years, new issues may arise. Drugs and alcohol, for example, can be especially dangerous for teens and young adults with type 1 diabetes. Alcohol causes blood sugar drops, and any substance that alters consciousness can make it more difficult to perceive the symptoms of hypoglycemia and to make sound decisions.

You may end up connecting with a number of experts to help you with different aspects of your child’s condition. “This is really a condition where we need to work as a team, not just in isolation,” says Trujillo. Here are some key players that may contribute to your child’s healthcare team.

• A primary care provider, such as a pediatrician, family doctor, or nurse practitioner, will oversee your child’s general health and wellness.
• An endocrinologist will likely be your main type 1 diabetes expert and write your prescriptions for insulin and diabetes management supplies. The endocrinologist will review glucose data and discuss type 1 diabetes treatment options.
• A diabetes educator (a certified diabetes care and education specialist [CDCES]) may be available at your endocrinology clinic. These experts are not doctors, but are extremely knowledgeable about the day-to-day challenges of type 1 diabetes. A CDCES may be your primary coach for subjects like insulin dosing and carb-counting.
• A registered dietitian (RD) can be helpful for families who want extra help learning how to adjust their nutrition habits.
• A psychologist or counselor can play an important role for children who are struggling with the emotional impact of their condition. Type 1 diabetes is a frequent cause of depression and anxiety; mental health support should be considered a normal and important part of diabetes care.

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Parents and caregivers do well to take an active role in coordinating all these different experts, advocating for exactly what their child needs. “You are the captain of a ship,” says Trujillo, “and you have support staff that helps the ship run, but ultimately you are the one at the helm.”

Type 1 diabetes can feel isolating because the impact it has on your entire family’s life will be difficult for others to understand.

The diagnosis itself can make it feel like your lives have been turned upside down. And it’s natural to worry about your child’s future, the potential complications, and their ability to enjoy a normal childhood.

“One of the first things I try to express to newly diagnosed children and their parents is that this is not their fault,” says Trujillo. “I make sure they know they didn’t do anything to cause their condition.”

One important source of support for many people is connecting with other families. Simply being in a room filled with other people who understand the stress, fear, and frustration of this condition can be encouraging for both you and your child. There is a vigorous community of families with type 1 diabetes, and many ways to connect with others.

• Young adults can join The Diabetes Link, a nonprofit offering peer support, resources, and volunteer opportunities.
• The nonprofit Children With Diabetes creates opportunities for families affected by diabetes to meet and help each other.
• Charities like Breakthrough T1D, which raises money for type 1 diabetes cure research, and sponsors marches, charity drives, and meet-ups.
• The American Diabetes Association curates a list of summer camps exclusively for children with diabetes.
• Members of online communities like Everyday Health’s network site Diabetes Daily offer advice and companionship.

• Type 1 diabetes is a lifelong condition that requires constant attention, and it will change your family life.
• Parents and all caregivers, including teachers, coaches, and babysitters, must have a good understanding of the risk of low blood sugar (hypoglycemia). But with the right preparation, type 1 diabetes does not need to limit your child’s participation in any activity.
• Blood sugar management technology is better than ever, and can help your child be safe and feel more confident and independent.
• Parenting a child with type 1 diabetes can be a stressful experience. Lean on your child’s healthcare team and seek out community resources to alleviate the burden.