My child has a T1D autoantibody. Now what?

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If you’re reading this, you’re probably in one of two camps: Either you’ve recently discovered that your child has one or more type 1 diabetes (T1D) autoantibodies OR you’re curious about what a “T1D autoantibody” is and why it’s crucial to understand them. No matter which group you belong to, one thing’s for certain—the health and well-being of your little ones are precious, and you’re a great mama for wanting to learn more.

Discovering that your child has a T1D autoantibody can trigger a whirlwind of emotions—concern, confusion and maybe even fear. But here’s the important thing to know: A T1D autoantibody diagnosis isn’t an instant sentence to diabetes. It’s more like a warning sign, and we’re here to help you understand what it means, how it impacts your child’s health and what steps you can take to navigate this journey with confidence.

Understanding T1D autoantibodies

Type 1 diabetes is an autoimmune disease where the immune system mistakenly attacks and damages the special cells in the pancreas responsible for making insulin, an important hormone. These cells are called beta cells. Now, when we talk about diabetes-related autoantibodies, we’re referring to certain proteins produced by the overactive immune system. When these autoantibodies are detected in a person’s blood, it’s a signal that their immune system is actively targeting to harm those important beta cells. 

It’s important to note that having one or more T1D autoantibodies doesn’t mean that your child will be diagnosed with onset diabetes right away. In fact, many people with detectable diabetes-related autoantibodies never develop diabetes. However, it does mean that there’s a higher chance of them getting type 1 diabetes down the road.

The stages of T1D development

Understanding the three stages of development and the role of autoantibodies in T1D can provide valuable insight into what to expect after a T1D autoantibody diagnosis. It can also help you to avoid the serious complications and long-term consequences of diabetic ketoacidosis (DKA) at diagnosis.

Stage 1: Autoantibody detection

Diabetes is known as an invisible threat because in its earliest stages, you won’t see any symptoms. This stage can only be detected by a simple blood test (more on that below). When a test detects one autoantibody, your child is in Stage 1, which simply means that your child is more likely to develop T1D than someone with no autoantibodies. A child can remain in Stage 1 for months or even years before progressing into Stage 2.

Stage 2: Presymptomatic stage

When a child’s blood test detects the presence of two or more diabetes-related autoantibodies and they begin to experience abnormal blood sugar levels (dysglycemia)this is classified as Stage 2 type 1 diabetes. This means that the immune system has started attacking the beta cells that produce insulin, which may lead to insulin dependence. Progression from Stage 2 to Stage 3 is inevitable, but the speed at which it occurs can vary from person to person.

Stage 3: Onset of clinical diabetes

Most children diagnosed with type 1 diabetes are already in Stage 3 of the condition, meaning that they have already lost a significant portion of their beta cells. This usually occurs because testing is often delayed until symptoms appear, and these symptoms can easily be mistaken for typical childhood experiences or overlooked entirely.

It’s essential for parents to stay vigilant and consider testing, even in the absence of apparent symptoms, and especially if there’s a family history of diabetes (either type 1 or type 2) or other risk factors. Early detection can make a significant difference in managing the condition.

Navigating a T1D autoantibody diagnosis

Navigating a T1D autoantibody diagnosis in your child can be an emotionally-charged journey. However, having a gameplan can significantly ease any fear and overwhelm that you may be feeling. 

Talk to your child’s doctor

Your first move should be to schedule an appointment with your child’s pediatrician. They’ll be able to conduct additional testing if needed, connect you with specialists like endocrinologists and nutritionists, and determine your child’s management plan. Depending on how many autoantibodies were detected, they may be able to help you explore new treatment options that can help delay the onset of Stage 3 T1D.

Regular check-ins

If your child’s Type 1 Test detected the presence of one or more diabetes-related autoantibodies, you’ll want to continue tracking your child’s blood sugar through regular monitoring with the help of your child’s doctor. You’ll also want to keep up with annual screenings to determine if the condition is progressing. 

Knowledge is power

Become a T1D expert. If type 1 diabetes doesn’t run in your family (or even if it does!), you may not know much about the disease. Learning about this diagnosis before your child shows symptoms means that you’ll be better prepared to recognize the signs when they do appear. Take the time to learn about the symptoms, treatment options and potential complications, because the more you know, the better you can advocate for your child’s health.

Build a support system

Having a child with a type 1 diabetes autoantibody diagnosis can feel scary and lonely if you don’t know anyone in the same boat. And while a competent and resourceful medical team is essential, being able to share our experiences with our peers is so important for our mental health. One of the best things about our generation of moms is that we have incredible communities, like Type One Together, right at our fingertips. Don’t be afraid to reach out, be vulnerable and lean on others who can empathize with how you’re feeling and want to offer their support.

Prepare for success

While focusing on the present is important, it’s also wise to plan for what’s down the road. Living with T1D means taking on new responsibilities, and there’s a learning curve that comes with managing it. Knowing if your child may become insulin-dependent can give you the opportunity to start developing the skills needed to manage T1D. It can also help you start to prepare for financial responsibilities in the future.

If you’ve made it this far and you’re still not sure if your child has a diabetes-related autoantibody, it might be a good idea to get them screened. Early screening is easy and it can reduce DKA at onset by more than 50%.^1,2 It’s a simple blood test that can be conveniently conducted at a doctor’s office, select labs or even with an at-home test kit. Health issues can be scary, but mama, your kiddos are lucky to have you. With you looking out for them every step of the way, they’re sure to have a happy and healthy future.