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10 Best Survival Tips for Parents of Newly-Diagnosed Type 1 Diabetes

Updated: Aug 5, 2020

Learning your child has type 1 diabetes can be an emotional and overwhelming experience for parents. Here are tips from a mom with type 1 diabetes who is also a certified diabetes educator.

Written by Marina Chaparro, RD, CDE, MPH

Child Type 1 Diabetes and parents
Learning you have a child with type 1 diabetes is a major life event. You'll never forget the exact moment of the diagnosis.

If you're the parent of a child with type 1 diabetes, you will never forget the date, time and exact moment when you learned about the diagnosis. Life as you knew it changed forever on that day. The first weeks to months can be incredibly overwhelming and filled with emotions. It takes time to adjust to this new lifestyle. As a parent, it can be very challenging to assimilate. But know this: diabetes is not your fault, and there is nothing you could have done to prevent it. The exact causes of type 1 diagnoses are still unknown and extensive research is underway to one day find a cure.

I speak from personal and professional experience. I was diagnosed with type 1 when I was 16 and grew up to become a certified diabetes educator specializing in children and adolescents so I can share an important lesson: type 1 diabetes is not a disability, it is a chronic condition in which the pancreas simply decided to stop working.

How you choose to view this condition will eventually shape how your child sees him/herself. That is why parents are an integral component of a child’s diagnosis. A parent’s responsibility is to provide the tools needed for appropriate diabetes management long term. If you choose to view your child's diabetes as a medical condition that can be managed, rather than some sort of a disability, your child will be able to do anything he/she wants in life.

Eventually, when it's your child’s turn to fly solo, she'll do it with confidence and ease. Teaching a child how to manage her diabetes independently—without burdening her with too much responsibility—is the tricky part. There is no one single way of caring for a child with diabetes. Diabetes management is very individualized; what works for your child may not work for another. Below are my top ten survival tips for parents with newly diagnosed children with type 1 diabetes.

#1. Forget the word “diet”.

There is no such thing as a “Diabetic Diet.” You might be inclined to buy items at the supermarket that are labeled “diabetic friendly” or “sugar-free,” but the reality is your child with diabetes doesn’t need “diabetic foods.” The primary nutritional goal for children with diabetes is to balance carbohydrates with the right amount of insulin. Children should have wholesome nutrition that includes plenty of fruits, whole grains, veggies, and proteins.

#2. Count your carbs.

Carbohydrates are in foods like bread, cereals, fruit, milk, and sugar. They are especially important for people with diabetes because they raise blood glucose levels. This does not mean your child should eliminate carbohydrates or go on a low-carb diet. Instead, you should know which foods contain carbohydrates and learn how to count carbs by reading the nutrition label, measuring foods using a food scale or learning carbohydrate amounts in commonly eaten foods. Remember, children need carbohydrates to grow and develop properly.

#3. Carry fast-acting glucose.

Make sure you always have a source of fast-acting carbohydrates in case of low blood sugars. Glucose tablets, juice boxes, gummy bears, or sugar packs are good options to have because they are easy to carry around. Avoid candy bars or foods that contain high fat or protein as they take time to raise blood sugar levels. Hypoglycemia can happen unexpectedly, so it’s best to plan.

#4. Never stop check, check, checking blood sugar.

Monitoring blood sugar levels will give you a better understanding of how your child is adjusting to the medications, food, and activity. Check blood sugars before and after meals, snacks, before exercise and bedtime. The more you know, the better decisions you will be able to make. You can also consider a continuous blood glucose monitor (CGM)-a tiny sensor inserted under the skin that measures real-time glucose levels without having to prick fingers constantly. Wearable technology, such as a CGM has given people with diabetes more freedom and information to be able to manage their diabetes better and live burden-free.

#5. Snack wisely.

Before being diagnosed with diabetes; snack time might have been your child’s favorite time of day. Now, snacks will need to be planned to fit your child’s schedule, activity and blood sugar readings. Two to three snacks per day, with a set number of carbohydrates, might be needed to ensure proper nutrition and stable blood sugars.

#6. Meet with a Registered Dietitian (RD) and Certified Diabetes Educator (CDE).

One of the most challenging aspects of managing diabetes is food. It’s a constant reminder that your children can no longer “just eat food” the way other kids without diabetes can. Instead, children and parents must become part dietitian and part mathematician to count every food and give insulin based on this estimation. A nutrition and diabetes expert can teach you how to count carbohydrates accurately by reading nutrition labels, using a food scale and using measuring cups. Additionally, a CDE can assess how many carbs per meal or snacks is appropriate based on your child’s age, weight, and activity

#7. Find support.

Even if no one else in your immediate family or your neighborhood has diabetes you are far from alone. According to the American Diabetes Association,1.25 million Americans have type 1 diabetes and an estimated 40,000 people will be newly diagnosed each year in the U.S. The diabetes online community is a powerful social support where you can find other caregivers that are going through the same experiences as you. Communities such as Children with Diabetes, Beyond Type 1, JDRF, provide reliable resources and education that are redefining what it means to live with type 1 diabetes.

#8. Advocate for your child at school.

Diabetes management does not take a break, which means your child needs appropriate medical care at school as well. It's important to ensure both you and your child feel comfortable going to school and managing diabetes safely. Schools are responsible for providing a safe environment for students to thrive. Children with diabetes need to be allowed to check blood sugars as needed, inject insulin when necessary, and treat low blood sugars.

Schools are often unaware of the complexity involved in the care of a child with diabetes. Learn more about the school bill of rights for children with diabetes and discrimination laws for children with diabetes at safe at school. You can also download toolkits to provide to schools and administrators.

#9. Get an ID for your child to wear at all times.

Your child should always wear or carry a medical alert identification. It can be a bracelet, necklace or something carried in your child’s backpack. Wearing a medical identification in an emergency can notify medical personnel what to do. It’s nearly impossible to predict when an emergency such as a low blood sugar or high blood sugar can occur.

#10. Remember, diabetes is not an illness.

Your child is not sick but has a chronic condition that requires constant attention, but through education, it is manageable and results in a healthy life. Your child can participate in sports, field trips, birthday parties and special events just like everybody else. You simply need to understand how to adjust medications and food to fit your child’s needs.

Years of both personal and medical experience have led me to conclude successful diabetes management is hard work, but not impossible to achieve. It comes down to family support, constant education for yourself and others, realistic expectations, adaptability, and resilience.

Fortunately, with the right education and treatment, diabetes should not interfere with your child's ability to lead a healthy and happy life. In fact, diabetes might become the reason your family starts leading a healthier life. It all depends on how you choose to view this new lifestyle: your glass can be either half empty or half full. The choice is yours.

This article was originally published in On Track Diabetes.

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