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10 Tips for Families New to Type 1 Diabetes

A diabetes diagnosis can be scary. Learning about the condition, its management, and medications such as insulin can be overwhelming. Parents and kids facing a new diagnosis of type 1 diabetes are beginning a long-term period of learning basic and then more complex points of diabetes management.

If you or someone you love has been recently diagnosed with type 1 diabetes, it will take some time to adjust to a new lifestyle. As a pediatric endocrinologist, I’ve been working with kids with diabetes for over 25 years. If I had to pick my top 10 tips that I believe could help all newly diagnosed families, I would offer this advice:

1. Life with diabetes is manageable. You will need to pay more attention to detail, and it will be a hassle to maintain good diabetes control, but your diabetes care team will give you the information you need to manage every aspect of your condition. Read everything you can get your hands on and soon you will be a pro.

2. You will not have diabetes for the rest of your life. Research is progressing at a fantastic pace. First we will have better ways of treating diabetes, but eventually (but hard to predict precisely when) there will be a cure. Your goal should be to take excellent care of diabetes so that, when the cure arrives, your body will be in excellent condition to receive it.

3. Get to know and feel comfortable with your health care team. Their goal is to teach you to manage diabetes at home, at school and at work. You must manage diabetes 24/7, but you spend relatively little time with the diabetes team. Make the most of your clinic visits and don’t be hesitant to call or message your doctor, nurse practitioner, diabetes educator, social worker or dietitian frequently. Ask questions and request for someone to explain things more than once — there is so much information to learn, you may need to hear it a couple of times before it completely sinks in. Knowing and talking to your diabetes team can help you prepare for optimally managing your diabetes.

4. There are serious complications from out-of-control diabetes. But complications do not arise simply from having diabetes, they arise from long periods of high blood glucose. Take your diabetes management routine seriously. Skipping blood glucose checks or insulin doses, making exceptions or trying to ignore your diabetes just because you feel fine can lead to serious problems down the line. By being careful about blood sugar management, you can completely avoid the serious consequences of diabetes, like vision, kidney and circulation problems.

5. Set up an emergency plan. Diabetes is a serious condition that can cause life-threatening dips in blood glucose. Wear medical ID jewelry or a wrist band, carry your blood glucose meter and an emergency supply of insulin and glucagon, always pack carbs for low blood sugar, communicate your health needs with people who are in a position to help out in an emergency (friends, roommates, teachers, coaches, etc.). Be sure you have an up-to-date emergency health care plan at school.

6. Make life easier by getting support and using practical tools. People with diabetes are part of a more active community than ever before. Not only can online support and advocacy groups be great ways to network and learn about your condition, but they can also offer great tips for managing everyday life. Consider using the Diabetes Calculator for Kids to figure out insulin doses or downloading the Tools4U Diabetes Care App, which covers sick day care guidelines and offers other diabetes management options. Check out the activities organized by Nationwide Children’s for families affected by diabetes on the Diabetes Clinic website.

7. Technology is becoming central to the best diabetes care. Check out websites from JDRF, the American Diabetes Association and Children With Diabetes. Also check out the latest insulin pumps and “smart” blood glucose meters that can help you calculate insulin boluses. Look into the continuous glucose monitors that tell you how your blood glucose is changing every five minutes. Read about the latest insulin pump that shuts off if you are experiencing low blood glucose. Check out the Nationwide Children’s website for the Diabetes Calculator for Kids and the Tools4U App and MyChart. Then ask your diabetes care team if this technology is appropriate for you.

8. Get savvy about your options. Health insurance is extremely important for people with diabetes. Insulin and glucose/ketone monitoring supplies, glucagon, insulin pumps, physician visits, etc., are expensive! Plan for the future, as good health insurance coverage is critical to good diabetes management. As with most things, not all insurance plans are created equal. Discuss health plan coverage with your parents, your insurance company and your social worker. Plan for the time when you will no longer be covered by your parent’s insurance policy. Don’t be afraid to ask for details or explanations. A little investigation can help you find and keep the best insurance plan for your diabetes.

9. Take extra precautions when exercising, traveling and under stress. Your body will react differently now than it used to when you are physically or emotionally stressed. Staying hydrated, rested and healthy can make exercise, travel and stress less of a shock to your system. Check your blood glucose more frequently and be prepared to check for ketones. Special circumstances like these make it even more important for you to have your emergency care plan organized.

10. Learn to plan ahead. It’s difficult to manage diabetes well if you fly by the seat of your pants. Carry a carb-counting guidebook to look up the carbohydrate counts in common foods and the nutritional content of foods at your favorite restaurants. Always keep track of your prescriptions and consider ordering refills in advance or signing up for 90-day supplies instead of monthly orders. Pack snacks and keep emergency carbs in your backpack, locker, car, purse and other places you can easily access. Have glucagon readily available. And remember to check your blood glucose every time before your get behind the wheel to drive.

By starting with these basics, your family will be well on its way to handling type 1 diabetes like experts. With time and practice, coping with this condition can become less like a stressful chore and more just a part of the daily routine.

To learn more about type 1 diabetes, join Dr. Mike in PediaCast!

David Repaske, MD, PhD.
Dr. Repaske has been chief of Endocrinology, Metabolism and Diabetes at Nationwide Children's since 2009. He has a strong interest in quality improvement in diabetes programs at Nationwide Children's and across the country. When not working hard at the hospital, he likes to relax on the family goat farm, hiking, mending fences, cutting hay, repairing tractors and looking after the good health of the animals.

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