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Discovering that your toddler has type 1 diabetes can feel overwhelming. It’s natural to have questions and concerns that you never anticipated as a parent or caregiver. But you are not alone — diabetes experts are here to support you and provide the help you need.
“A type 1 diabetes diagnosis is life-changing, for sure,” said Dr. Laura Levin, a pediatric endocrinologist specializing in hormone-related conditions in children at Lurie Children’s Hospital of Chicago. “It’s one of the reasons I went into endocrinology. It can be so emotional and overwhelming for families in the beginning, but we try to be there for them and help them every step of the way.”
Dr. Levin recently spoke with myT1Dteam to help families navigate life after a child’s diabetes diagnosis. Keep reading for practical tips and supportive advice. If you have questions, talk to your child’s health care provider.
If you’re feeling overwhelmed right now, you’re in good company. According to the American Diabetes Association, 2 million Americans are living with type 1 diabetes. Of those, more than 300,000 are young children and adolescents.
“The diagnosis of type 1 diabetes can be very overwhelming at first,” Dr. Levin said. “It’s important that you understand that this diagnosis is not going to define your child and that your child is going to grow up and follow any career path they choose.”
Dr. Levin encourages caregivers not to let this chronic condition define their toddler. “Day one is the hardest because you’re going to be overwhelmed with all the information,” she said. “Each day, hopefully, will get a little bit easier in the sense that you will feel more comfortable with the management of this disease, but don’t beat yourself up if you’re overwhelmed at first. That is completely normal.”
If you or your child need help processing their type 1 diabetes diagnosis, you can ask a pediatric social worker, mental health provider, diabetes educator, or endocrinologist for guidance.
Although you and your toddler may face challenges that others don’t, your family can still enjoy many of the treasured moments that contribute to a happy childhood and a healthy life.
“Help your child navigate diabetes as best you can while also allowing them to be a child and go on sleepovers, go to camp, play basketball, and do activities,” Dr. Levin said.
It’s understandable if this advice makes you anxious. As you learn about life-threatening complications like diabetic ketoacidosis and the nuances of a diabetes management plan, you may feel the need to shield your child from every conceivable threat. However, Dr. Levin encourages finding a balance between diabetes care and joy in daily life.
“They can eat the birthday cake or the brownie just like their friends and siblings,” Dr. Levin said. “A lot of times, families associate diabetes with restricted sugar. And while we want your child to have a healthy, balanced diet – it is really important – they don’t have to be on a sugar-free diet.”
Dr. Levin said most toddlers and young children with type 1 diabetes can attend a childcare program. It’s essential to ensure that the program you choose has at least one employee who is knowledgeable about diabetes care, comfortable with diabetes management, and willing and available to support your child.
“You definitely want an individual in the day care who is capable of giving insulin, checking blood sugar, understanding what high and low blood sugars mean, treating low blood sugar, and giving glucagon if necessary,” Dr. Levin said.
Glucagon is a hormone made by the pancreas. A synthetic version can quickly treat hypoglycemia (low blood glucose, or sugar), especially in severe cases. It can also be given as a nasal spray, making it easy for everyone to administer.
“A lot of day cares are equipped to manage type 1 diabetes,” Dr. Levin said. “It doesn’t have to be a medical professional who takes that on.” If you find a day care willing to help but the employees lack training in diabetes management, ask a diabetes educator or someone on your child’s diabetes care team if they would be willing to offer training.
“Our staff including our diabetes educators are always happy to work with the day care team and educate anyone who wants to learn diabetes management,” Dr. Levin added.
Parents and caregivers of young children know that healthy eating and toddlers don’t always mix. It can be challenging to get some toddlers to eat anything at all. When you add in a type 1 diabetes diagnosis and insulin injections, eating habits and meal plans can get even more complicated.
It’s best to take insulin before meals. This can sometimes be difficult with children who may decide they don’t like what’s on the table or they’re simply not in the mood to eat. “If they don’t eat the amount you planned for when giving insulin, you’ll need to give them other food to balance out the insulin they’ve already received,” Dr. Levin said.
In some cases, when a child doesn’t eat consistently at meals, Dr. Levin recommends that parents wait to see how much the child eats before giving the insulin.
“It’s not ideal,” Dr. Levin acknowledged. “But with picky toddlers, sometimes you have to fight your battles.” If you’ve already given them insulin and they refuse to eat what’s on the table, you’ll need to quickly find something they will eat to prevent low blood sugar. Or, encourage them to eat the food available by explaining that it’s good and healthy.
If you struggle to keep your child’s blood glucose levels in the target range based on their unpredictable eating habits, be flexible, but also seek help. A dietitian specializing in diabetes management can be an important part of your child’s health care team.
With the advent of insulin pumps, blood glucose meters, continuous glucose monitors, and other diabetes management tools, technology makes it easier than ever to monitor blood sugar levels, adjust your child’s insulin dose, count carbohydrates, and more.
“Over the last 15 years or so, technology has come a long way,” Dr. Levin said. In the past, she explained, newly diagnosed children could be getting anywhere from three to five insulin injections a day and having a finger poked six to eight times a day.
“Nowadays, we’re putting a lot of children on continuous glucose monitors and pumps,” Dr. Levin said. “They’ve been really helpful and, I would say, lifesaving for some parents because they don’t have to poke their child’s fingers multiple times a day, or overnight, and they can look at trends. The monitors show which direction the blood sugar is headed. I think that’s really helpful and comforting for parents.”
Dr. Levin said some continuous glucose monitors come with apps to help with diabetes management. She mentioned the Dexcom Follow app and the FreeStyle Libre app. These types of apps measure blood glucose levels. They can also let you monitor your child from afar and alert you if there is a problem. Ask your child’s doctor if you have questions about which apps you should be using.
Also, ask your doctor if the monitor sensors need calibration (adjustment) and how many times per day. You’ll still have to poke your child’s finger, but only once or twice per day. Some models of sensors need frequent calibration, some don’t.
Some parents like using apps to count carbs so they can ensure they’re giving enough insulin. “MyFitnessPal and Figwee are great apps to figure out the carbs,” Dr. Levin said.
In addition to asking your child’s diabetes care team for help, you can look for additional resources from nonprofit organizations, support groups, and your local community. For example, if you or your toddler has a needle phobia, the Association of Child Life Professionals (ACLP) might be able to help.
“I think needle phobia is a true obstacle with type 1 diabetes,” Dr. Levin said. “We try to get Child Life involved. It’s a great resource to help the family and the child.”
Certified child life specialists (CCLS) are experts in child development and can help children and their families prepare for and cope with stressful experiences. Ask your child’s doctor about Child Life programs in your area or search the ACLP directory.
Other places to look for support and resources include:
Dr. Levin also recommends asking your child’s doctor for suggestions.
Finding other families who understand life with type 1 diabetes can provide emotional and practical support.
“I think having a support group is really important, especially for parents who are having a difficult time,” Dr. Levin said. “It’s helpful to know you are not alone.”
Some of the benefits of connecting with others include:
To find other families of toddlers or young children with type 1 diabetes, you might consider:
Dr. Levin recommends checking out Friends for Life, an annual conference where families can get information and connect with others.
Wherever you look for support, making the effort is essential. “Knowing you have support and looking for other resources is key for you to be successful and to be a good parent,” Dr. Levin said. “You need to be supported. And I think having that connection with another parent is the most valuable connection you can make.”
On myT1Dteam, the social network for people living with type 1 diabetes and their loved ones, more than 3,500 members come together to ask questions, give advice, and share their stories with others who understand life with type 1 diabetes.
Does your toddler have type 1 diabetes? What tips or questions do you have for other parents and caregivers? Share your experience in a comment below, or start a conversation on your Activities page.
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Flaviu Titus Patrascanu, M.D.
is a physician specializing in endocrinology and diabetes, nutritional, and metabolic disorders.
Learn more about him here.
Suzanne Mooney
writes about people, pets, health and wellness, and travel.
Learn more about her here.
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