If you’re new to type 1 diabetes, you might feel a bit overwhelmed at first because there’s so much information to digest.
Type 1 diabetes is a chronic disease that requires lifelong treatment but with proper management your child can live a happy and healthy life.
You and your child will learn how to live with and manage type 1 diabetes – your child’s diabetes health team will make sure of it.
But to help get you through these early stages, I’ve put together a simple step-by-step guide to prepare you, your child, and other involved parties for a new way of life.
6-Step Checklist for Newly Diagnosed T1D Children
Your child has just been diagnosed with diabetes type 1. Most T1D is diagnosed at between 4 and 14 years of age.
How the disease is explained to a 4-year-old will be very different from the information shared with a teenager. You might prefer to speak to your child’s diabetes care team (see step 1) and discuss how the family approaches the topic of diabetes at home.
There are ways to ensure children of every age can understand a T1D diagnosis without being scared. If you find it hard to discuss the diagnosis with your child, ask for advice during step 1.
Step 1: Outline a Diabetes Management Plan with Your Child’s Doctor
A diabetes management plan or diabetes care plan is the first step. If your child has just been diagnosed with type 1 diabetes, their healthcare team will set up an appointment to discuss this plan as soon as possible, usually within a matter of days.
A pediatric endocrinologist is responsible for your child’s medical treatment but is only one part of a diabetes care team. Members of your child’s team will often include a nurse, diabetes educator, dietician, and psychologist.
This experienced group draws up a broad child’s diabetes management plan together according to fixed protocols. The endocrinologist will go over the details of this plan with you and your (older) child, answer questions and clarify any uncertainties. No question is a dumb question when it comes to your child’s health.
Stick to the diabetes management plan, even if you already have experience with T1D management. The diabetes care team needs to see how your child responds to the treatment(s) specified in the plan, using this data to make adjustments, if necessary.
Note that when you make adjustments at home without checking them with the team first, the information they gather might be flawed.
Further appointments are made with a dietician, psychologist and, in some cases, social worker. You will usually be given leaflets about different aspects of diabetes treatment and management. Reading these at regular intervals (alone or with your child) adds an extra layer of guidance during this overwhelming time.
Step 2: Check Your Child’s Insurance Cover – Diabetes Appointments, Medication, Monitoring and Pumps
As T1D requires regular administration of insulin, the disease is legally recognized as a disability in the UK and Europe. The majority of consultations, therapies, glucose measuring devices and insulin administration equipment are fully covered.
In Australia, Medicare takes income into account and/or offers NDSS-subsidized equipment.
In the US, individual state mandates mean health insurance agencies must cover diabetes education, medication, and equipment to some degree. Caps on out-of-pocket costs apply. Exactly how high or low these out-of-pocket costs are depends on your child’s policy.
An insurer requires official proof of diagnosis which your child’s diabetes management team will supply. However, processing the paperwork can take time.
When contacting your child’s health insurer, ask the following questions:
- How many appointments with the different members of my child’s diabetes management team are covered per year? Are all disciplines covered? Are the parents eligible for psychiatric or social worker support if necessary? And what are the out-of-pocket costs?
- Insulin therapy – what quantity of insulin is covered (per month/year)? And are there any out-of-pocket costs?
- Additional prescribed oral antidiabetic drugs – what quantities are covered (per month/year)? And are there any out-of-pocket costs?
- Finger lancets – how many are covered (per month/year)? Are there any out-of-pocket costs?
- Capillary glucose meter – which brands are covered? How often can the meter be replaced? And are there any out-of-pocket costs?
- Continuous glucose monitoring device (CGM) – which brands are covered? How often can the sensor/transmitter/reader be replaced? Are both capillary blood glucose meter and CGM covered? Are there any out-of-pocket costs?
- Insulin pump – which brands are covered? Are individual parts covered (reservoirs, cannulas) and how often can these be replaced? Are there any out-of-pocket costs?
- Glucagon emergency kit – how many are covered (per month/year)? Are there any out-of-pocket costs?
In the US, the Health Insurance Marketplace lets you compare local health insurance coverage. If your child’s health insurance means high out-of-pocket costs, it might be worth shopping around.
Step 3: Essential Supplies
While you won’t be left in the lurch by the diabetes care team, here’s a quick checklist for what should always be on hand.
- Lancing device and lancets: many children with T1D use CGMs. But CGMs aren’t completely failproof. Your child will need to carry out finger-stick tests when a CGM result doesn’t seem quite right or if the sensor fails.
- Insulin vials and insulin pens or syringes: you can’t manage type 1 diabetes without insulin. Have insulin and a way to administer it on hand at all times.
- Sweets, juice boxes and/or glucose tabs: in the initial period after a new type 1 diabetes diagnosis the risk of a hypo (low blood sugar) can be quite high. Until the correct doses of insulin for every situation (rest, sport, stress) have been calculated, there is a higher risk for hypoglycemia. Having rapid sugar sources on hand can prevent an unpleasant hypo from becoming a much more frightening loss of consciousness.
- Glucagon emergency kit: if a child becomes unconscious due to low blood sugar, sweets and juice boxes are of little use. An injection of glucagon can save a life.
- Ketone test strips: high blood sugar is quickly rectified by following the bolus insulin dosage plan. But if your child is sick, the CGM results are unreliable or your child fails to test their blood sugar using a finger-stick device for a longer period, untreated hyperglycemia can cause life-threatening ketoacidosis. Urine test strips detect the presence of ketones. It’s important to contact your child’s diabetes care team immediately if ketones are present in the urine.
Step 4: Download a Diabetes Management & Logging App
The digital age has done wonders for people with diabetes. The combination of continuous glucose monitoring and diabetes management apps has been proven to lower HbA1c levels and keep blood sugar levels within target ranges in both children and adults.
While there are plenty of apps to choose from, we naturally recommend Gluroo.
Gluroo is an all-in-one solution that’s extremely user-friendly. The Gluroo community includes parents like you who want to understand exactly what their children are experiencing and make a positive and constructive difference.
The free Gluroo app for iPhone and Android can connect your child’s CGM device and insulin pump and monitor them from a distance. With device monitoring, diabetes care team collaboration, non-intrusive reminders, and alerts, and achievement and milestone messages, you and your child can enjoy more peace of mind and the company of a community familiar with your situation.
Step 5: See a Dietician and Create Diabetes-Friendly Meal Plans
Not only must you absorb new information, cope with the emotional aspects of a new T1D diagnosis and learn how to administer insulin, but you also need to learn about nutrition.
Calculating carbs is crucial for everyone with diabetes. And as the parent(s) of a child with T1D, you’re in charge of mealtimes.
For any child, learning they have a chronic disease makes them feel different. Nothing is more confronting than having a different plate of food at the family table. By involving the entire family in a diabetes-friendly lifestyle, you can improve family health across the board and take away some of that ‘I don’t fit’ feeling.
Don’t know where to start? Speak to the diabetes team’s dietician or nutritionist. They’ll be more than willing to help.
Step 6: Develop a 504 Plan
While a diabetes management plan guides your child and you toward optimum health, the 504 Plan or Individualized Health Plan (IHP) is designed to help schools understand and cater to your child’s needs.
This document protects the health of children with T1D and discourages potential discrimination. With a 504 plan, your child’s school must provide the same range of services it provides for children without T1D and, where this isn’t possible, provide an acceptable alternative.
Examples are diabetes-friendly school meals, vending machines with low-carb alternatives and equal access to all sports and school trips. A 504 Plan also includes information on how school staff should intervene if your child experiences hypoglycemia or hyperglycemia.
A parent can call a 504 meeting at any time, and the plan should be reviewed every year. A 504 team consists of the (older) child, parents, teacher(s), school administrator and school counselor. Medical information is provided by way of a doctor’s note that includes the diagnosis of T1D and any individual student needs. For example, in a school where smartphones are banned in the classroom, your child is permitted to use one for CGM scans.
You can find several IHP templates on the Internet. The example designed by the American Diabetes Association is commonly used.
If you don’t live in the US, the UK government website provides a Supporting Children with Medical Conditions IHP template. In Australia, an IHP is part of the Managing Students’ Health Support Needs at School procedure. Individualized health plans are also used in Europe with standard templates available in local languages.
Of course, no one wants a T1D diagnosis.
However, there are some very helpful products available for children with T1D, with positive scientific developments on the horizon.
CGMs are becoming more and more reliable. They send alerts when sugar levels sink too low or rise too high, communicate information to family members, caregivers and medical professionals, and pair with modern automated insulin delivery systems (insulin pumps).
As we slowly move from open-loop to hybrid closed-loop insulin delivery methods, the associated improvements in insulin dosing precision lead to lower T1D complication risks.
Take a breath and start on those initial 6 steps. With modern diabetes care and equipment, you and your child won’t be alone on your path to good, long-term diabetes management.