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When Your Child Is Diagnosed with Diabetes: Parents’ Questions for the Health Care Team

Parents of children with diabetes often have concerns about the disease, its impact on their family, and how to keep their children safe and healthy. Use these questions to talk with your child’s health care team and learn about your child’s diabetes care needs… at diagnosis and later on as well. The links provided below each question have background information about the topic in question to help you prepare for your child’s health care team visit.

What are the different types of diabetes?

  • Which type of diabetes does our child have?
  • Will it ever go away?
  • Will my child with type 1 diabetes always have to take insulin?

Helpful information:

Image of teenage girl smiling

How is diabetes managed?

  • How can we help our child manage his/her diabetes?
  • How often will our child need to visit you each year?

Helpful information:

Who should be part of my child’s health care team?

  • What role does each person play in my child’s care?
  • How do we contact them?

Helpful information:

How can we work together as a family to help our child?

  • How can we help our child check blood glucose; take insulin or other medication; eat healthy foods; be more active; and learn about diabetes?
  • Who can help us work together as a family?

Helpful information:

What emotional issues might our child and family face?

  • What emotional issues might our child and family face? Will diabetes affect the way our child behaves?
  • When do we start letting our child manage his/her own diabetes care?
  • Who can help us cope with these issues?

Helpful information:

Should we tell friends and family about our child’s diabetes?

Helpful information:

How do we pay for diabetes care?

The Affordable Care Act of 2010 offers new rights and protections to make health coverage more fair and easy to understand.

  • You can find coverage that fits your budget and meets your needs.
  • All children, even after a diabetes diagnosis, can get coverage through a parent’s health plan until age 26.
  • Your family can qualify for free or low-cost care.
  • Your child cannot be denied coverage, nor be required to pay more for coverage, after a diabetes diagnosis or any other pre-existing condition.

To learn more, visit www.healthcare.gov.

If your family has recently lost health benefits due to a change in work status, find out if you are covered under COBRA. COBRA (the Consolidated Omnibus Budget Reconciliation Act) is a federal law that allows for insurance coverage to be continued temporarily for workers who have lost health benefits.

For additional health insurance resources, visit:

What resources are there to help our child in school?

What resources are there to help our child in school? Helpful information:

What does this mean for other members of our family?

  • Does it mean our other children will get diabetes too?
  • What about other family members?

Helpful information:

What research is going on?

Several large national and international studies are under way through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and other groups. To learn more about some of these studies, talk with your health care team and visit the websites below:

  • NIDDK’s Clinical Trials website answers some of the most frequently asked questions about participating in research studies. NIDDK conducts and supports a wide range of research aimed at finding ways to prevent and treat diabetes and its health complications.
  • DirecNet — The Diabetes Research in Children Network — involves a number of clinical centers working to determine the potential use of glucose monitoring technology and its impact on the management of type 1 diabetes in children.
  • JDRF lists the clinical trials it funds as well as research being conducted by other institutions and organizations.
  • The consortiums to identify The Environmental Determinants of Diabetes in the Young (TEDDY) is an international effort to identify infectious agents, dietary factors, or other environmental factors that trigger type 1 diabetes in genetically susceptible individuals.
  • The National Collaborative on Childhood Obesity Research (NCCOR) is promoting research to help reverse the childhood obesity epidemic.
  • The SEARCH for Diabetes in Youth study will help us learn how many youth have type 1 and type 2 diabetes; identify the medical problems that arise in children with diabetes; improve the health care children receive; and understand how diabetes shapes their daily lives.
  • Type 1 Diabetes TrialNet is an international network of researchers who are exploring ways to prevent, delay, and reverse the progression of type 1 diabetes. To find out if you can join a study, visit the TrialNet website or call 1-800-HALT-DM1 (1-800-425-8361).
  • T1D Exchange Clinic Registry encourages research and development projects and programs in type 1 diabetes by helping researchers characterize individuals living with the disease, conduct analyses, and identify participants for future clinical studies.

The following NIDDK studies have concluded. Visit their websites for more information about helping your child.

  • The TODAY (Treatment Options for type 2 Diabetes in Adolescents & Youth) study followed a large group of children with type 2 diabetes to find the best ways to care for type 2 diabetes in children and teens.
  • The HEALTHY study was an intervention in middle schools to lower obesity rates. Findings reported in 2010 reported lower obesity rates in students at highest risk for type 2 diabetes who started out overweight or obese in sixth grade.

Additional Resources for Parents and Children

National Diabetes Education Program
www.YourDiabetesInfo.org or call 1-888-693-NDEP (1-888-693-6337)

National Diabetes Information Clearinghouse
http://diabetes.niddk.nih.gov or call 1-800-860-8747

JDRF
www.jdrf.org or call (800) 533-CURE (2873)

American Association of Diabetes Educators
https://www.diabeteseducator.org/ or call 1-800-TEAM-UP4 (1-800-832-6874)

American Diabetes Association
www.diabetes.org or call 1-800-DIABETES (1-800-342-2383)

Centers for Disease Control and Prevention
www.cdc.gov/diabetes or call 1-800-311-3435

Children with Diabetes
www.childrenwithdiabetes.com

HealthCare.gov
www.healthcare.gov or call 1-800-318-2596

Joslin Diabetes Center
www.joslin.org or call 1-800-JOSLIN-1

See NDEP’s Resources for Diabetes in Children and Adolescents for a listing of government agencies, professional organizations, and voluntary associations that provide information and resources related to diabetes in children and adolescents.

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