7 Tips For Managing Your Child’s Type 1 Diabetes

Learning your child has type 1 diabetes can be overwhelming. You quickly become responsible for glucose monitoring, administering insulin, and planning and monitoring all meals—inside and outside the home. Managing your child’s diabetes isn’t optional—type 1 diabetes can be deadly without proper management. Coping with it all can be a job of its own.

What is Type 1 Diabetes?

Type 1 diabetes is a chronic autoimmune disease that affects about 1 in 400 children and young adults. It causes blood sugar levels to remain abnormally high, increasing the risk of various health problems.

“Blood sugar level is controlled by a hormone called insulin,” explains Lily Chao, MD, a pediatric endocrinologist at Children’s Hospital Los Angeles. “In Type 1 diabetes, the body’s immune system destroys the cells that produce insulin, removing the body’s ability to control blood sugar,” she says. There isn’t a cure for Type 1 diabetes, but with the right strategy and support, you can keep your child’s blood sugar within a healthy range and reduce their risk of complications.

Initial Diagnosis

Many children are diagnosed with Type 1 diabetes when they are infants or toddlers, but it can be difficult to know when something is wrong. After all, they’re too young to describe their symptoms. Looking for certain cues can help.

Two of the most common? Increased thirst and increased urination. These two symptoms are generally what spur parents to call their child’s pediatrician.

There’s no rulebook when it comes to caring for a child with type 1 diabetes. “So much of it is trial and error,” says Amanda Waks, whose daughter Coco was diagnosed with type 1 diabetes at age three. Even so, there are ways to lighten the load. Let’s look at seven of them:

1. Learn the language

Nicole Pearl, whose son Rex was diagnosed with Type 1 diabetes at age 6, says one of her biggest obstacles was “understanding how to figure out insulin-to-carb ratios and all the other requirements that come with being able to manage your child’s blood sugar.” She says, “It’s like learning a foreign language!” Pediatric hospitals and doctors often provide educational materials, but digesting all of that info takes time and energy.

Olivia Lamosa in the hospital
Credit: Arianna Lamosa | Olivia Lamosa

Arianna Lamosa, whose daughter Olivia was diagnosed with type 1 diabetes at age 3, says that Olivia staying in the hospital for a couple of days while her blood sugar was stabilized helped ease the transition. “I’m a big believer that as soon as a child gets diagnosed, you stay in the hospital for a couple of days,” she says. “It’s all about stabilizing the child to lower their blood sugar, making sure they don’t have any ketones, and learning this new lifestyle.” The hospital stay gave her time to be trained to care for Olivia’s diabetes. “It’s all a learning curve,” Lamosa says.

Joining parent Facebook groups such as Diapers and Diabetes and Moms of Type 1 Diabetics can help. Pearl, Waks, and Lamosa describe these communities as safe spaces to ask questions, find support, and help others in similar situations.

For more learning, the top sites recommended by these parents are:

2.  Find a system for constant monitoring

Type 1 diabetes requires constant management, which causes many parents to obsessively worry. After Coco was diagnosed, Lamosa set alarms at night just to check in. “I would get up at midnight and then again at 3 a.m. to test her blood sugar,” she says.

Rex Kaplan managing his type 1 diabetes

Pearl can relate to feeling stressed all the time. “When Rex was first diagnosed, his blood sugar was super high,” she says. “We needed to make sure that we could get the ketones out, and we needed to ensure his blood sugar didn’t drop to a place where he didn’t wake up in the morning.”

Technology like continuous glucose meters and monitoring (CGM) apps can help alleviate fears. So, too, can developing a consistent system for blood sugar monitoring and maintenance. Creating a foolproof system can make all the difference, says Chao. She recommends establishing a “routine of blood glucose checking, insulin dosing, and structured meal and snack times.”

Adhering to a program makes it easier to maintain your child’s blood sugar levels, which, in turn, makes treatment less worrisome.

3. Assemble your child’s care team

Over time, parents begin to assemble a care team of various medical providers required to support their child. In hindsight, some parents wish they had established their care team earlier—getting ahead of it can provide great stress relief and symptom management.  It is recommended to include the following providers in your child’s care team:

Pediatrician: Your child’s pediatrician serves as your home base, in charge of all records across your doctors. Although most pediatricians are familiar with Type 1 diabetes, not all of them have experience managing it, but the rest of your care team helps to fill the gaps.

Pediatric endocrinologist: Pediatric endocrinologists, like Chao, have specialized training in hormone diseases and disorders, like type 1 diabetes. They’re well-equipped to diagnose and treat diabetes and its common side effects, such as extreme thirst, fatigue, and nerve pain.

Eye doctor: Children with Type 1 diabetes are more likely than their peers to experience vision problems. An annual eye exam makes it easier to catch potential issues early on.

Registered dietitian or certified nutrition specialist: Adapting your child’s diet and creating a snack and meal plan takes time and effort. A registered dietitian (RDN) or certified nutrition specialist can help by recommending diabetes-friendly recipes and grocery shopping strategies. They can also educate you and your child about how food and drink influence blood sugar. Educating your child can increase the likelihood of them wanting to make the right choices.

Mental health professional: Type 1 diabetes can take an emotional toll on your child. “Parents often face the challenge of a toddler who doesn’t understand why they suddenly have to get multiple ‘pokes’ a day or a teenager who worries about how her friends will perceive them,” Katherine Vu-Boast, MD, says. Your child might feel self-conscious about wearing a glucose meter or feel left out when friends bring birthday treats to school. “It often helps to get connected with a psychologist or other mental health expert who has experience helping children with chronic medical conditions. This can help your child cope with the diagnosis in a positive way.” Vu-Boast is an associate clinical director of diabetes, division of pediatric endocrinology, at UPMC Children’s Hospital of Pittsburgh.

4. Educate teachers, babysitters, family, and other caregivers

When your child is old enough to attend daycare or school, it can be challenging to trust someone else with their care. Federal law requires public schools to provide diabetes care to children who need it, but private schools aren’t governed by the same rules. Moreover, each school’s approach to diabetes care can vary. Meeting with the school administrator about your child’s needs is essential. Waks recommends saying, “My child was diagnosed with Type 1 diabetes and needs special care.” Then see if they are open to working with you. “Some are, and some aren’t,” she says.

Leaving your child at home with a babysitter or family member can also be stressful. In addition to educating them about food restrictions, look for things you can do for peace of mind. For instance, Waks says she typically feeds Coco before going out to prevent sudden blood sugar spikes or lows that whoever’s in charge would have to manage alone. She also chooses activities within a 30-minute radius, so she and her husband can get home quickly if needed.

Technology can help with further peace of mind. Most digital glucose monitors provide real-time blood sugar readings that can be viewed on your smartphone. Several of the parents we spoke with said this feature is a game changer, especially when they want to go out with friends or do something fun, like catch a movie.

5. Manage the emotional burden

Since food and drinks cause blood sugar levels to fluctuate, you need to be mindful of everything your child consumes. But, changing and strictly managing your child’s diet can be emotionally taxing for your family.

One tip is to make sure there are always diabetes-friendly snacks available for your child to choose from. “I was used to giving Coco snacks on demand, just dumping goldfish in a bowl,” Waks says. “After she was diagnosed, I could no longer do that. I felt like I was constantly saying no to what she wanted. I felt like a bad mom. I was so strict around food. I had never really been like that before.” Being strict might make you feel like the bad guy, but your child will adjust. Dietary changes take time and effort. Be patient and remember these new rules are necessary for a healthy, happy life.

You might also worry that type 1 diabetes will affect your child’s ability to do normal kid things. Pearl says she and her husband have found ways to support Rex so he can “focus on being a kid.” For example, when Rex was younger, Pearl says she would attend events, like birthday parties, so that she could monitor food for him, allowing him to have fun without stress.  “It made me feel more comfortable knowing that there was someone there who had his back,” she says.

Kids are resilient, and most adapt well to their diagnosis. However, if you feel your child is having trouble coping with the emotional burden of the disease, don’t wait to ask for help. If you notice changes in your child’s mood or behavior, parents say mental health professionals, like child psychologists, can be an invaluable resource.

6.  Manage fairness when siblings are involved

Another common challenge that parents face is providing equitable care to all their children. For example, having different rules for different kids around food can cause problems. Waks says this was a big one for her. Coco’s brother, Benny, doesn’t have Type 1 diabetes.

At first, Waks says, when Coco saw Benny eat something she couldn’t, she’d ask, “If he can eat it, why can’t I?” Navigating these situations takes patience and compassion. Parents can find it difficult to explain certain rules without their diabetic child feeling left out or feeling there’s favoritism at play.

Likewise, special diabetes snacks provided for one child can make another child feel as though they aren’t getting special treatment. Parents may find their other children mimicking symptoms for attention, for example. A family counselor or child life specialist can help you navigate family dynamics by offering suggestions and solutions to the specific issues you face.

7.  Keep necessary items on hand

Having certain supplies on hand can make caring for your child with type 1 diabetes easier. Chao recommends the following:

  • A blood glucose monitoring device
  • Insulin injection device (for example, an insulin pump or syringes)
  • A backup insulin injection device (in case the first one malfunctions)
  • Fast sugar sources (for example, juice, glucose tablets, and granola bars)
  • Blood ketone test strips (to monitor for ketone acids during illness or when blood sugar stays high)
  • Measuring cups and spoons (for calculating portion sizes)
  • A food scale (to weigh food portions)
  • Lancets/finger sticks (if your child doesn’t wear a continuous glucose monitor)
  • Alcohol swabs (for cleaning and sterilizing your child’s skin)
  • Goo Gone Bandage and Adhesive Remover (for painless removal of CGM tear pads)
  • Lidocaine cream or ointment (to make injections and finger sticks less painful)
  • Bottled water (for managing ketones)

Parents recommend keeping one set of these items at home and storing a second set in a “go bag,” like a girls or boys fanny pack, small backpack, or travel bag. That way, you and your child can easily take all of their necessary supplies to school, sports practices, and other events.

The bottom line

Type 1 diabetes can be unpredictable and difficult for both you and your child. The disease doesn’t always present obvious symptoms either, so outsiders, like friends, family, and classmates, might not understand the constant management that’s required.

Vu-Boast recommends educating people in your life so they “realize how difficult it is for anybody—adult or child—to perform the sugar monitoring and insulin dosing required to manage their sugar, all day, every day.” Likewise, she says, “It’s helpful to acknowledge to your child that this is hard, that it is unfair, and that they aren’t alone.”

“Give yourself grace,” adds Chao, and do your best to stay positive. Waks agrees. “If your child has a bad blood sugar day, it’s okay,” she says. “We have a lot of bad days—I’m not going to lie—but I try not to dwell on them.”

Perhaps, most importantly, the parents we talked to say not to let this disease keep you from doing the things you want. “I don’t want diabetes to ever limit our life,” Pearl says. “Instead, we always try to put the safety nets in place we need in order for us to be able to try new things, whether it’s traveling or allowing Rex to attend his first sleepover.”

References and further reading

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