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Your child was diagnosed with type 1 diabetes. What’s next?

Finding out your child has type 1 diabetes is a game-changer. It’s like being whisked to an unfamiliar country, where you need to learn a new language and daily routine. While some things may seem familiar, like food and exercise, some elements are entirely new, such as taking insulin and testing blood glucose levels. Navigating childhood diabetes and making everything work effectively requires a whole new way of thinking and doing.

It can be scary and overwhelming—for you and for your child.

How does type 1 diabetes affect your child’s body?

Type 1 diabetes (T1D), sometimes called juvenile diabetes, happens when your child’s body stops producing insulin, a hormone that helps convert glucose (sugar) from food into energy. Without it, the body can’t naturally regulate blood sugar levels. So, your child must get insulin from an outside source—injected by syringe or infused into the body by a device called an insulin pump. Otherwise, blood sugar levels can soar too high, which can cause a number of long-term health problems from blindness to organ and limb damage if untreated. 

To make sure that blood sugar levels stay in a healthy range when your child eats, you have to take a drop of blood from a finger stick and use a device called a glucometer to test it. Each result guides how many grams of carbohydrates your child can eat, the insulin dose, or how much exercise your child needs. High blood sugar isn’t the only issue. Low blood sugar can cause problems when your child has too much insulin and not enough food in the body. It’s a lot to manage.

How can you help a child with diabetes?

We asked several parents and diabetes experts what advice they’d give to those dealing with a child’s new T1D diagnosis. Here are their tips.

1. Learn the basics.

Diabetes management involves balancing food intake, exercise, medication, and testing then responding to changing blood glucose levels. There’s no cure for childhood diabetes, but there are very effective treatments. Understanding how each factor works in the body is crucial for managing your child’s care. 

“Education for the entire family is important,” says Jennifer McCrudden, APRN, FNP-C, CDE, a board certified family nurse practitioner and certified diabetes educator. “Educating oneself by reading articles on diabetes on websites from the JDRP or ADA, seeking support groups, attending conferences, are very helpful.”

The American Diabetes Association (ADA) offers a type 1 diabetes care manual as a free download to help explain it all. Talk to your child’s healthcare team, and ask every question you can think of—they are there to help you adjust to your child’s diagnosis.

2. Take things one day at a time.

While you can understand how diabetes works on an intellectual level, the reality is that things can sometimes happen that feel out of your control. “This can be a very stressful and scary time for the child but also for the parent,” McCrudden says. The needles can be painful or anxiety-inducing at first. Or, maybe your child is embarrassed about dealing with the condition in front of other kids or feels like a burden. 

“Diabetes management is a balancing act,” says Lisa Goldsmith, of Natick, Massachusetts, whose daughter was diagnosed at 7. “You can do everything right and still get high or low blood sugars. It is not an exact science and you will not ever have perfection.” But you will figure out a routine and develop a new normal. The more you all adjust to the condition, the more good days you will have.

3. Ask for the tech.

Diabetes management for children requires a lot of tools: syringes, insulin, a blood glucose testing meter, test strips, alcohol swabs, and other items. Many people assume that injections are the only way to get insulin and test strips are the only way to measure glucose, but there is no one-size-fits-all diabetes management plan. With injections, children often need two or more a day. Some choose to use an insulin pump, a wearable device that delivers insulin all day and can administer insulin before meals with the push of a button, rather than via injection. 

“There are so many new advancements in diabetes technology,” McCrudden says. “I would advise patients meet with a Diabetes Educator who has knowledge on all the choices out there.”

An insulin pump can make it easier to maintain blood glucose levels at recommended levels (though still requires close monitoring). There is also a wearable device to check blood sugar known as a continuous glucose monitor (CGM) that can send blood glucose levels to a portable device or smartphone. CGMs can better show trends in glucose levels than finger sticks and meters can, but require wearing a sensor in the body for a period of time.

“I highly recommend getting your child a CGM, if it is possible for you and if your child is amenable to this,” suggests Susan Cotman, of Wayland, Massachusetts, whose daughter was diagnosed two years ago. “It has brought substantial peace of mind, but also better insight into how my daughter’s blood glucose responds to the foods she eats and to exercise. … Seeing her glucose levels in finer detail with the CGM, versus a periodic finger check, was a real eye opener for me, and has taught me that what I thought I understood about nutrition and how it affects one’s body is not the reality, especially in someone whose body cannot make insulin.”

But having helpful tech doesn’t replace thinking through choices in diet, exercise, and insulin dosing. “The biggest misconception is that these devices will do everything for the patient,” McCrudden says. “The patient still needs to be savvy in learning how to problem solve.” While the device is supportive, the patient needs to make choices and be actively involved in his or her own care, she says.

 4. Find support.

Speaking to others who get it can give you confidence and understanding about your new day-to-day. It can feel overwhelming, but you’re not alone. 18,400 children and teens are diagnosed with type 1 diabetes every year. “Find a real-life person to support you, don’t do it alone,” said Moira McCarthy, author of The Everything Parent’s Guide to Children with Juvenile Diabetes. Her daughter Lauren was diagnosed 22 years ago at age 6. 

“Find another parent or an adult with type 1,” she advises. “There are always ways to find them. You can call the local chapter of the Juvenile Diabetes Research Foundation (JDRF) or the ADA, or ask your endocrinologist if there are community groups where you can find others to talk to.” McCarthy acknowledges there are many online support groups but cautions against using them solely. “Online, there can be a lot of fear and it’s not always based on fact,” she says. Connecting with people who have been through a type 1 diagnosis can help your family adjust.

5. Keep dreams alive. 

Don’t let diabetes change what you have always thought your child could achieve. After her daughter was diagnosed at 7, Goldsmith heard some sage advice: “All the hopes and dreams I had for Madelyn yesterday can still be all the hopes and dreams I have for her today,” she said. “I try really hard not to let Madelyn feel like a victim of this disease. If there is a sport she likes, she can play. She wanted to go to overnight camp, and we figured out a way to send her and for her to be safe. It will take more pre-planning and behind the scenes managing, but I promised myself that I would find a way to help her do everything she wants to.”