Coping With Worry: When Your Child (or You) Tests Positive for Type 1 Diabetes Antibodies
Learning that your child (or you) has tested positive for T1D antibodies can be overwhelming. It’s completely normal to feel worried, anxious, or scared.
Research shows that about 3 out of 4 parents feel increased anxiety when they first learn about their child’s positive antibody test. This anxiety is a natural response to caring about your child’s health.1,2
To manage your anxiety:
- Get support. This includes sharing your concerns with your healthcare team, family, and friends. Sometimes just having someone listening to you can help. You can also look for online support through Breakthrough T1D (more in the Resources section).
- Focus on what you can control. That includes:
- Making and keeping recommended medical appointments
- Monitoring your child per your doctor’s instructions
- Learning the signs and symptoms of T1D
- Ensuring your family follows a healthy diet
- Remaining physically active
- Consider the positives. You took a brave step getting your child (or you) screened. By doing this, you have significantly reduced the risk that they will experience severe symptoms such as DKA. It means you and your family are better prepared for what may come, and that regular monitoring will catch any changes early. Your child may also be eligible for the first FDA-approved treatment to slow the progression of T1D, and/or eligible for clinical trials for other potential treatments.
If you find, however, that your worrying is interfering with your daily life, you have trouble sleeping or eating, you feel overwhelmed most of the time, or your anxiety doesn’t improve over time, it’s time to reach out to a healthcare professional.
While it’s natural to worry about the future, try to focus on the present. Many families find that their anxiety decreases over time, especially as they become more familiar with monitoring and develop a routine. Remember that having antibodies doesn’t mean your child will develop diabetes immediately— many children remain healthy for years.
It Takes a Team
Whether you have early-stage T1D or are in stage 3, you will need to work with a team of healthcare professionals in addition to your primary care doctor and endocrinologist. This should include3
Diabetes nurse educators can help educate you about managing your condition.
Optometrists and ophthalmologists are important. People with diabetes have a higher risk of eye diseases that can cause blindness, making regular eye exams critical.
Registered dietitians can help you with your nutrition.
Podiatrists are important. People with T1D have a high risk of nerve damage to the feet that can lead to ulcers and even amputations. Regular screening is key, and be sure to get immediate treatment for any foot injuries.
Pharmacists can help with medication management to ensure safe and effective use.
Dentists are important. High blood sugar can lead to gum disease and other oral health issues.
Nephrologists are important. Kidney disease is a major complication of T1D over time. You will need to see a nephrologist if blood tests start to show problems with your kidneys.
Mental health professionals can help you cope with the stress of having a chronic disease.
If you are receiving teplizumab, you can include an infusion nurse as part of your team.
References
- Johnson SB, Lynch KF, Roth R, et al. My child is islet autoantibody positive: impact on parental anxiety. Diabetes Care. 2017;40(9):1167-1172.
- O’Donnell HK, Rasmussen CG, Dong F, et al. Anxiety and risk perception in parents of children identified by population screening as high risk for type 1 diabetes. Diabetes Care. 2023;46(12): 2155-2161
- American Diabetes Association. Your health care team. https://diabetes.org/health-wellness/ diabetes-and-your-health/your-healthcare-team
