For parents of children with type 1 diabetes mellitus the diagnosis often comes as a bolt from the blue. There is always a huge amount of information to digest and process and it’s easy to feel overwhelmed by the sudden influx of information on medications, blood glucose testing, dietary changes, and all the new routines to integrate into your life and that of your child.
Diabetes is time-consuming, requiring frequent blood sugar levels testing - usually at least four times a day - carbohydrate counting, and monitoring. The constant management of juvenile diabetes can take a mental and emotional toll, both on your child and on you as parents. However, a type 1 diabetes diagnosis does not mean the end of your kid’s childhood; your child will still be perfectly capable of doing all the things their friends do, whether it is playing sports, attending school, or going to sleepovers at friends’ houses. Yet even these aspects of everyday life will require a bit more planning and thought than for parents of children who don’t have diabetes.
A type 1 diabetes diagnosis in a child often feels like having another full-time job, requiring you to be on top of a whole host of things, including regular testing of blood glucose levels throughout the day; daily insulin injections to maintain normal blood glucose levels; ensuring your child has all their medication and diabetic supplies; notifying and educating teachers and other caregivers; and helping your child adjust to any lifestyle and dietary changes recommended by their doctor.
While some children, particularly teenagers, will eventually learn to self-manage, most will require significant support and help, particularly in the months following their initial type 1 diabetes mellitus diagnosis. As with many medical conditions, knowledge is power and equipping yourself with as much information about type 1 diabetes and diabetes care as possible will set you on the right road to taking control of the condition and helping your child have a happy and normal childhood…
1. Be organized
A well-established routine and good organization can make life significantly easier for you and your child as you both learn to get to grips with their diabetes. You will need to ensure they take their insulin injections as prescribed, and keep on top of the regular blood glucose levels testing needed to ensure they administer the correct dose.
Two of the main areas that can be difficult for parents of children newly diagnosed with diabetes are insulin calculations and carbohydrate counting. Fortunately, there are many apps and technological solutions to help you keep on top of these vital aspects of diabetes care. For example, apps such as Glucose Buddy allow you to track blood sugar, insulin, food, and activity and gain insight into both daily and long-term trends.
Diabetes research and technology is constantly improving and developing, making care and diabetes management easier. Some of the latest continuous glucose monitors have dedicated apps allowing you to monitor the blood glucose levels of your children in real time and help spot and correct high blood sugar levels more efficiently. In March 2018, the Dexcom G6 Continuous Glucose Monitor (CGM) was approved by the FDA for use in young children and toddlers, making it the first CGM available in the United States for children under 14 years of age. An alternative CGM to help with blood sugar control in kids over 14 years of age is the Medtronic Guardian Connect.
If carbohydrate counting seems a daunting task, there are also numerous dieting and diabetes-specific apps to help you out. These offer a quick way to check on the carbohydrate content of your child’s favorite foods and provide a quick reference tool for when you are out and about.
Providing your diabetes care team with data on your child’s carbohydrate intake, insulin dosages, and blood sugar levels, helps them form a more tailored diabetes management plan and suggest any necessary adjustments to their care, lifestyle or medication.
Establish a routine
Many parents of children with type 1 diabetes find their kid's blood glucose levels are more likely to fluctuate during the school holidays, as these periods often come with changes to the daily routine. Having regular meals and ensuring kids get plenty of sleep can help maintain stable blood glucose levels.
Recent studies have shown that poor sleep patterns are linked with poor blood sugar control and potentially poorer adherence to treatment plans. Setting a regular bedtime and encouraging your child to get plenty of sleep can help keep their blood sugar levels in the normal range and minimize the number of insulin injections needed to regulate their blood sugar.
Encouraging children to exercise daily will also have a positive effect as physical activity helps increase insulin sensitivity. Exercising every day can also help maintain greater stability in blood glucose levels, making proper care and management of diabetes type 1 easier.
2. Embrace any recommended lifestyle changes
Following a type 1 diabetes diagnosis, your physician or medical care professional may recommend lifestyle changes to improve your child’s diabetes management. If your child is overweight, physicians will often recommend taking steps to help them lose weight, but adjustments to diet, notably monitoring the quantity of carbs they eat and getting more physical activity will probably be recommended even if they are a healthy weight.
Encourage more physical activity
Physical activity aids weight loss but also has other benefits for diabetes care. It can help manage blood glucose levels as the body’s muscles use more glucose when active. Consequently, an active child needs less insulin than one who has a predominantly sedentary lifestyle.
Furthermore, regular exercise also promotes healthy sleep patterns, which is also important in regulating blood sugar effectively and has a positive effect on mental health, decreasing the likelihood of children suffering from depression or anxiety.
With so many benefits to regular exercise, for example, it helps reduce the risk of heart disease, so try to find activities your child actually enjoys as this will increase the chance they will engage and get involved. If they love sport, try to get them signed up to play in a team or go to a summer camp, but if they are not interested in organized activities, there are plenty of other options, such as going on bike rides, playing in the yard, or even just getting outside and playing with friends.
It is important to be vigilant regarding blood sugar levels before and after exercise and to adjust dosages of insulin accordingly. There are a number of steps you can take to reduce the impact physical activity will have on your child’s blood glucose levels, such as:
- Give them more carbohydrates before they start exercising
- Provide a stock of snacks, fruit juice and glucose tablets to take with them in case they get low blood sugar (hypoglycemia)
- Ensure they have their medication with them when they go to games or practices
- Monitor blood sugar levels more closely following physical activity to see whether insulin doses require adjusting
If you are unsure about how exercise may affect your child’s blood sugar, speak to your physician or endocrinologist for advice on how to manage a healthy exercise schedule alongside proper diabetes care.
Change of diet
Your physician may recommend adjusting your child’s diet to encourage better management of their type 1 diabetes. Nutrition is important whether you have diabetes or not, but a healthy diet is even more vital when providing proper care for someone with diabetes.
Carbohydrates are found in most foods, and for children with diabetes, controlling carbohydrate intake is an important part of managing their condition. Carb counting provides the data needed to accurately adjust the amount of insulin that needs to be administered by injection or their insulin pump.
Strictly speaking, no foods need be off limits to your children, but you should be careful with foods high in carbohydrates, particularly simple carbs, such as white bread, pasta, and high sugar foods such as candy as too much can lead to high levels. Try to encourage your kids to swap these foods for complex carbs, such as vegetables and whole grains, which have more nutritional value and contain plenty of fiber.
3. Ask the right questions of your diabetes care team
The more information you have, the more in control you will be. There is a wealth of information available for parents of children with diabetes, but inevitably you will have questions or need to clarify aspects of your child’s care and diabetes control. Here is a list of questions to ask your health care team to ensure you have the relevant knowledge at your fingertips.
- How often and when should I monitor my child’s blood glucose levels?
- What are the benefits and disadvantages of the different forms of insulin administration, for instance insulin pumps and shots?
- How do I recognize and treat hypoglycemia (low blood sugar)?
- How do I recognize and treat hyperglycemia (high blood sugar)?
- What foods should I encourage my child to eat and which should be avoided?
- How do I count carbohydrates?
- How do I adjust insulin and food intake when my child engages in physical activity?
Other issues to consider discussing with healthcare professionals include how to manage your child’s diabetes when you are not present; for example if they go to a friend’s house for a sleepover, go to a summer camp or when they are at school; and how often you need to visit your physician or other members of your diabetes care team.
4. Prepare for School
Preparing your child for school when they have type 1 diabetes can be a difficult time for parents, as you’ll need to rely on others to provide support and care. Federal law provides certain protections for children with diabetes when they go to school, for example, schools are required to have trained staff to monitor blood glucose levels and administer medication and must offer this during any school excursions, activities or field trips. They are also prohibited from making family members provide care while the child is at school, transferring students elsewhere for care, and they cannot prevent children from participating in any school-sponsored activities.
When sending your child off to school, you’ll need to make sure they are prepared and that the school is fully informed of your child’s needs. Caregivers, teachers, and other staff also need to know what to look out for, such as the signs of hypoglycemia - (e.g. dizziness, headaches and shakiness) and hyperglycemia (e.g. frequent urination and fruity-smelling breath) as well as what to do if your child has high levels or low levels.
The American Diabetes Association recommends working with your diabetes care provider to create a diabetes care plan for your child to take to school to ensure the school nurse and teachers are up to date on their treatment and requirements.
What to take to school
- A “pack” with general diabetes information and specific information about your child’s diabetes care plan
- A “low box” with snacks to raise blood sugar levels, such as glucose tablets and fruit juice
- Emergency glucagon if necessary
- Insulin and medication
- Testing supplies
- A medical alert bracelet or ID
5. Seek support… You are not alone!
The Centers for Disease Control and Prevention (CDC) estimates around 193,000 Americans under 20 years of age have either type 1 or type 2 diabetes, and each year nearly 18,000 new cases of type 1 diabetes are diagnosed in this age group, so you are not alone as parents of a child with diabetes.
There are many resources available to help parents of children with diabetes, ranging from local support groups to online communities providing support and advice. You may also wish to consider introducing your children to other youngsters dealing with type 1 or type 2 diabetes, for example at one of the many diabetes camps available in the United States.
Aside from the physiological effects of diabetes, the condition can also have an emotional and psychological impact, not only on your child but on you as well. If you are finding it difficult, don’t struggle alone; make sure you have someone to talk to.
Your child is not ”always sick”, but they do have a chronic condition that requires constant monitoring and requires you both to learn a whole new set of routines to manage their health effectively. Successful diabetes management is possible, but it takes hard work and close attention. In time you and your child will learn how to balance their diabetes medication and food intake so they stay healthy and happy.