Q&A: Helping your child manage type 1 diabetes
Numbers aren’t good or bad – numbers are numbers.
This is what Terra Clausen, RN, a diabetes educator at M Health Fairview Masonic Children’s Hospital, tells children with type 1 diabetes and their families. It can be hard to look past the numbers in diabetes care, from insulin to blood sugar (also known as blood glucose). But Clausen encourages families to see the forest, not just the trees, and recognize their child can continue to be their whole self after a type 1 diabetes diagnosis.
It's something Clausen and her family have learned from experience. When her son was diagnosed 15 years ago, it inspired Clausen to pursue a career in nursing.
“None of the things that make your child unique are going to change. They’re going to continue eating their favorite foods, they’re going to continue going to soccer or football practice and games,” said Clausen. “Diabetes is going to find a way to fit into their life, not the other way around.”
Read on for Clausen’s advice on helping your child manage type 1 diabetes.
What is type 1 diabetes?
It’s a chronic condition, meaning that it will stay with your child throughout their life. We often diagnose type 1 diabetes in childhood or the early teenage years, when kids will have symptoms like increased urination and thirst, extreme dehydration, or weight loss. Sometimes, children will come to our hospital with a diabetes-related complication like ketoacidosis, which leads to their diagnosis.
In kids with type 1 diabetes, their pancreas doesn’t produce enough insulin to break down or transform sugar (glucose) into energy. This can cause it to build up in their blood, resulting in high blood sugar and several potentially life-threatening complications if the condition is not well-managed.
What can families expect after their child is diagnosed?
When a child is diagnosed with type 1 diabetes, they’ll meet with one of our endocrinologists, a diabetes nurse educator, and a dietitian. I work with a team of five diabetes nurse educators, six pediatric endocrinologists, and two pediatric endocrinology nurse practitioners who specialize in the care of children and young adults with diabetes at the M Health Fairview Pediatric Specialty Clinic - Discovery, which is located on our children’s hospital campus in Minneapolis. We also see patients with diabetes at our pediatric specialty clinics in Burnsville, Maple Grove, and Woodbury.
Immediately following a child’s diagnosis, we educate them over the course of three days about type 1 diabetes in a way that is developmentally appropriate for the child’s age. Patients will follow up with their pediatric endocrinologist quarterly, before transitioning to an adult diabetes specialist in young adulthood.
At home, children will need to have their blood sugar levels monitored and take insulin, which helps their body process sugar for energy. They can take a long-acting insulin shot once per day, then supplement as needed when they have high blood sugar or are eating more carbohydrates. Many children also get an insulin pump, which delivers a continuous infusion of insulin in addition to added doses around mealtimes or when they have high blood sugar.
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What should families know about monitoring their child’s blood sugar?
Many of our patients check their blood sugar between four and seven times a day, including before meals, before and after physical activity, and before bedtime. A lot of children and teens with type 1 diabetes have continuous glucose monitors. These are sensors implanted under the skin that give regular blood sugar readings to a phone or other monitoring device. Continuous monitors update their readings every few minutes, and it can be tempting to stay glued to your phone, looking at every reading. I remind parents and guardians to put their phone down: Check before meals and if you have a concern.
Our glucose levels are always adjusting because of what’s happening within our bodies. I tell families to look at trends. If you notice your child’s blood sugar rising over time, let’s talk about why it might be rising. We want children and their families to know why they might see shifts in blood sugar. For example, a child’s numbers might drop after a meal, when their insulin kicks in and starts to work.
How does diabetes care change as a child gets older?
Insulin is a hormone, which means it interacts with the other hormones in our body. For a growing child, their insulin needs are always changing because they're always changing. Children typically need higher doses of insulin during puberty, for example, because of stress, puberty and growth hormones the body is producing, and the physical growth that’s occurring. Life is not static, and diabetes is not static. It's constantly evolving based on your child’s growth, activity level, stress, and illnesses.
Children with type 1 diabetes are “moving targets,” in a way, because as soon as you figure out the correct insulin doses, they’re growing, and we need to reevaluate again. We meet with children and their families every three months to review their insulin needs and glucose levels, but we’re also in continuous contact with families via phone, My Chart, and in-person nursing visits.
Do children and teens experience side effects from diabetes?
If a child’s blood sugar levels are within their target range, they should experience few to no side effects. When their blood sugar level starts to rise above where we would like it to be, it starts to interfere with a child’s ability to concentrate, which often shows up in school. The same thing happens when their blood sugar is too low: It's hard for them to concentrate, and they can experience mood swings.
If diabetes isn’t well managed, it can also cause long-term complications. One of the most common complications is kidney failure, but it can also lead to heart disease, diabetic retinopathy, and other serious illnesses. It’s important for your child to manage their diabetes well throughout their lifetime – not necessarily perfectly, but well.
Type 1 diabetes is an autoimmune disease, so it can also be associated with an increased risk of other autoimmune diseases, most commonly celiac disease and thyroid disorders. Lab work is a standard part of our diabetes care. We’re always looking out for signs of another autoimmune disease so we can intervene early if we notice symptoms.
I also tell parents and guardians: Your child is now living with a chronic disease, and grieving is a normal part of receiving their diagnosis. Chronic disease can increase a person’s risk of depression and suicide. We get children connected with our child psychologist early on in their treatment to normalize the mental health effects of the diagnosis. Helping your child isn’t just about checking blood sugar or giving insulin, it’s about helping them learn to navigate the nuances of chronic illness and supporting them in the extra effort they must make to manage their health.
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