The ABCs of T1D: How to Explain Type 1 Diabetes to a Child

As with any chronic disease, the initial diagnosis of Type 1 diabetes can seem shocking. The subsequent lifestyle changes aren’t easy and when you add in the vocabulary you need to know relating to the disease, your to-do list is long.

The challenge is even greater when you have to explain everything to your child. The easiest way to break it down is to use analogies they’re familiar with. Using an airplane, butterfly, or bird can help your little ones better understand how to monitor their sugar. For example, tell them the airplane has to be “in the zone” to get to where it’s going; for their blood sugar, “in the zone” represents their target glucose levels.

Here are the basic terms you need to know if you’re taking care of someone who has Type 1 diabetes, and how to explain it to a child:

  • Carb counting: Carb counting is crucial for maintaining healthy blood sugar levels. You should count carbs before you start eating and give insulin accordingly. Fast-acting insulin takes about 20 minutes to start working, so administering prior to eating is best. To explain carb counting to your child, tell them you need to know how much power to give the airplane to keep it at a safe altitude.
  • Glucometer: A glucometer is the machine that measures blood sugar levels. It should always be with or near the person with Type 1 diabetes and there should always be someone who knows how to use it nearby. To explain it to your child, tell them the glucometer measures if they are “in the zone”; if their sugar is too high or too low, they’re not in the zone and both of you need to work together to get them back there. Food, water and insulin have the power to do it.
  • Glucose injection: Glucose injections should always be kept near the child in case their sugar drops too low and needs immediate intervention. Explain to your child that it’s their backup in case they run out of power to put them in the zone. It will put them back at the right level, just like you would want an airplane to do.
  • HB1AC test: HB1AC tests are performed during routine endocrinologist visits. The tests measure how well the treatment plan and ratios are working for the individual. Normal ranges are around six percent. You can explain HB1AC to your child by telling them it measures how well their routine is working, with 6 to 7 being ideal. With the airplane analogy, it tells them how often they fly perfectly.
  • Insulin: Insulin lowers the amount of sugar in the blood. It is usually produced by the pancreas, but individuals with Type 1 diabetes receive insulin via injections or insulin pump therapy. Tell your kids insulin is the power that keeps them from going above the zone.
  • Insulin to carb ratio: Insulin to carb ratio is the ratio of how many grams of carbohydrates equate to one unit of insulin. For example, if the insulin to carb ratio is 1:15, this means if you eat 15 grams of carbs, you need one unit of insulin. Explaining insulin to carb ratios to kids can be complicated, especially if they don’t know division. You can tell them it’s how the pilot knows how much to change the flight path so they stay at a safe altitude.
  • Ketoacidosis: Ketoacidosis occurs when blood sugar levels are too high, resulting in blood turning acidic. It’s when the flight is getting too out of hand and you need to call in the co-pilot.
  • Sensitivity/correction factor: Sensitivity is the drop in blood glucose levels for every one unit of insulin taken. A sensitivity level of 50 means if the individual’s blood sugar level is 170 and you give them one unit of insulin, their blood sugar will be 120. Explain to your child that the sensitivity is the amount that the flight path will change if they turn the plane.     

If your child is on an insulin pump, there are several other terms that may need to be explained.

  • Basal rate: Basal rate is the constant insulin drip being produced by the insulin pump. It can vary based on time of day and can be modified. You can tell your child that the basal rate is the autopilot of the plane so they’re being given in small amounts, even when you don’t realize it.
  • Bolus: Bolus is any single dosage of insulin. For kids, it’s the “quick fix” of control they need to keep being their best.
  • Continuous Glucose Monitor (CGM): A CGM is an additional infusion set that automatically checks blood sugar levels every five to 15 minutes. It then sends that data to the insulin pump, providing a more detailed analysis of blood sugar levels across extended periods of time. It also has the ability to suspend insulin delivery when the blood sugar levels are low and to increase delivery when the blood sugar levels are increasing. You can explain it to kids by telling them it monitors their altitude levels at all times (and they can literally see it on their pump screen).
  • Insulin pump: Insulin pumps send insulin into the body through an infusion set through both boluses and a basal rate. Rather than using injections multiple times per day, the individual can press a button and receive insulin instantly. In the case of your little one, it allows them to steer the plane at all times.

Explaining medical conditions to kids is never easy, but using common analogies can help them to digest what they should be doing. It may also be helpful to draw a picture and show your child what it looks like when their sugar goes too high or low, using the plane as an analogy. Teaching your little ones these terms will help them to be the best flight captains they can be!

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Photo credit: Steve Debenport

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