What is diabetes?

Kid focus

Diabetes is a disease where the blood sugar levels in the blood are too high or too low. Children have diabetes if they have problems with their insulin. Insulin is a natural hormone in the body that helps to convert food into energy.

Insulin is what helps the body to use sugar so you can move, grow and live. If your child does not have enough insulin or the body can’t use the insulin in the body, then we say the child has “increased blood glucose levels” or blood sugar levels. Insulin is normally produced by the pancreas, an organ in the body. Your child may need to have insulin injections if the body does not produce enough insulin on its own.

Diabetes is a chronic disease, meaning your child will have it for an entire life. It is not contagious and there is no cure, but can be treated with insulin injections. Diet and exercise can help. Children with diabetes can live full and normal lives as long as diabetes is treated. Untreated diabetes is life-threatening.

There are two main types of diabetes:

  • Type 1 diabetes: When the pancreas can no longer make insulin. The body uses insulin to help break down food to turn it into energy. Type 1 Diabetes can begin at any age, but usually happens in children and young adults. Children face two problems with Type 1 Diabetes: hypoglycemia (low blood sugar) and hyperglycemia (high blood sugar). Both problems can be life-threatening if untreated.
  • Type 2 diabetes: When the pancreas doesn’t make enough insulin or the body is unable to use insulin correctly. In the past, it was usually found in adults older than 40 and overweight. Today more cases of Type 2 diabetes are being found in children. More children and teenagers are overweight, and more children today are not physically active enough. Being overweight and not getting enough exercise are two causes for Type 2 diabetes.

National Diabetes Education Program, 2003 & Children with Diabetes: Information for Teachers, 2005 NIH Medlineplus 2005

What are some common signs of diabetes?

The symptoms of diabetes can differ slightly between Type 1 diabetes and Type 2. Ask your doctor if you notice any of these symptoms.

Diabetes symptoms can happen when your child has low blood sugar or high blood sugar. Signs of either of these problems can include:

Hypoglycemia (low blood sugar)

  • Mild to mid-level symptoms include:Being shaky or sweaty with no apparent reason.
  • Very pale or dizzy or feels weak.
  • Headache or blurry vision.
  • Acting confused, nervous, or very clumsy.
  • Behavior or personality suddenly seem very changed.
  • Irritable or sleepy and doesn’t want to move.

Severe symptoms may include:

Hyperglycemia (high blood sugar):

Symptoms may include:

  • Feels thirsty even if drinking a lot.
  • Needing to urinate often.
  • Feels nauseous (sick to stomach).
  • Vision is blurry or they feel dizzy
  • Feels tired often or sleepy.

National Diabetes Education Program, 2003

Other severe symptoms can include:

  • Suddenly loses a lot of weight
  • Infections.
  • Cuts and bruises or sores that don’t seem to heal as fast as they should.

National Diabetes Education Program

What can I do to help my child now?

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You have made an important first step by reading more information on diabetes. You also should talk with other parents of children with diabetes. They have gone through what you are going through now and may be able to help. You also can get help from parent support and advocacy groups such as content and the Diabetes Research Institute. Research tells us that the earlier we begin to help children grow and develop, the better the results for the child and family.

Click here to contact the Diabetes Research Institute

Below are some checklists of things to help your child. Remember that you are not alone.


Getting Started

Get your child tested for diabetes:

A number of specialists can help your child and your family with diabetes. Get your child tested to find out what type of diabetes he or she has. Then get regular checkups to make sure your child stays healthy. (See the section on professionals for a complete list.) Check with your pediatrician and insurance for a referral to specialists who can help your child with any diabetes-related problems.

Click here for a list of websites

Click here for a list of books or videos

Work with my child’s service providers:

A service provider can be your doctors, nurses, teachers, social worker, or any professional. Remember that you know more about your child than anyone else, and are the main influence in your child’s life. Here are some tips for speaking with service providers:

  • Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don’t understand.
  • If you think your child needs something in particular (such as counseling by a psychologist or assistive technology), keep asking until you get it or until you understand why it is not needed.
  • If your child’s diabetes is severe, you may need to use your school system’s hospital or homebound service to provide an education for your child.

Your child may need a Section 504 educational plan to make sure your child’s educational and health care needs are met. Section 504 is part of the Rehabilitation Act of 1973. This federal law allows qualified children with chronic illness to have special services or supports in their schools. For more information on Section 504, see this website: http://www.hhs.gov/ocr/504.html

Create and keep updated a diabetes management plan for my child:

A diabetes medical management plan is something that the National Diabetes Education Program recommends. It tells the caring adults in a child’s life what they need to know to help keep your child safe and healthy. Give it to your child’s teachers and caregivers, e.g., staff at a child care center, after-school care, summer camp. These key things should be in your written plan:

  • Date of diagnosis: When you found out your child had diabetes.
  • Current health status. (Record any problem areas.)
  • Emergency contact information: how to reach adults (such as yourself, other family members and doctors) with detailed knowledge of your child.
  • A statement telling how willing and able your child is to perform self-management tasks (such as giving himself or herself an insulin shot).
  • List of diabetes equipment and supplies your child uses.
  • Specific medical orders for:
    • Blood glucose testing.
    • Insulin – when and how much insulin to give.
    • Other medications your child needs.
    • Meal and snack plan to keep blood sugar levels ideal.
    • Exercise – when, what kind and how much is needed.
    • Anything else that needs to be watched or measured.

Have my child wear a Medic Alert bracelet:

This way, in case of an emergency, vital information on your child’s condition is available.

Teach my child about this condition and how to stay healthy:

The more your child knows about diabetes the better. Understanding what causes a problem helps your child know what foods to eat or not, and why. Your child will become more independent in keeping healthy as he or she gets older. Being more independent and taking care of one’s diabetes can help make your child feel more like his or her friends and less “different.” It can help with self-esteem and make a child feel more in control.

I will spend the time to teach my child’s teacher(s) about diabetes and glucose management:

Share your child’s diabetes medical management plan with his or her teacher(s). Teachers can help your child with blood sugar management. The more your teacher knows about your child’s diabetes, the more the teacher can help keep your child healthy.

I will also ask my child’s teacher to:

  • Allow my child to get water when needed and to have easy, timely access to the restroom.
  • Allow my child to check blood sugar when needed.
  • Allow my child to eat quick sources of glucose to help fix low blood sugar -perhaps eating a hard candy, drinking juice or taking glucose tablets.
  • Allow my child to eat a snack before physical activities, gym class or recess.
  • To know what is healthy and what is not for my child.
  • Allow my child a private place and time to take insulin injections and a safe place to store the insulin (which may need to be refrigerated), needles and other supplies.

I will be aware and try to be a good listener to my child:

Your child will experience many feelings as a result of having diabetes and needs to talk about feelings. Listen to your child. Understand that your child may feel different from other children. Being “different” doesn’t feel good sometimes.

Children want to belong and be like other kids. Monitoring blood sugar and taking shots makes them feel different, sometimes causing social problems. Watch carefully for signs of depression. Make a counselor or trusted adult aware, and ask them also to be a good listener for your child.

Find a support group for my child:

Children need to know they are not the only ones with a problem. Help your child get into a support group for children with diabetes. Talking with other children with diabetes gives them comfort and a feeling of not being alone. They can share ideas with other kids about how to manage their condition. (Remember parents can benefit from a support group, too.)

Dial 211 to find support groups for children with diabetes

I will help my child to stay fit:

Take part in family fun, recreation activities, play and all parts of your daily life. Having diabetes means your child must sometimes exercise or limit exercise to control low or high blood sugar. But your child can still enjoy the day. He or she still needs to play like any child and also plenty of opportunities to stay fit. For a list of activities and programs, see below.

Dial 211 to find recreation areas and programs

Do many children have diabetes?

Diabetes is very common in children. In the U.S., about 13,000 new cases are found each year in children. There are a total of 125,000 children with diabetes.

American Diabetes Association: Student’s Rights, n.d.

What does diabetes mean for the health of my child?

Children with diabetes must test blood glucose levels or blood sugar levels throughout every day. The testing is done with a blood glucose meter. If blood glucose levels are too low or too high, a child must immediately do something to bring the levels back to the proper range. A child can eat or drink something sweet (low blood sugar) or can exercise (high blood sugar). The third thing a child can do is to take insulin to bring the blood glucose levels into the ideal range. Your child’s doctor will tell you the ideal range for your child.

The three most common ways to give insulin are:

  • Insulin syringes: Shots or injections of insulin using a needle.
  • Insulin pen which looks like a fountain pen.
  • Insulin pump: A computerized device. An insulin pump is usually worn on a child’s waistband, delivering small, steady doses of insulin.

Carefully watch diabetes and blood glucose levels. Levels not checked and adjusted can lead to very serious effects. Diabetes untreated can even result in death. Other problems that can be caused over time by not managing your child’s diabetes and sugar levels can include:

Careful treatment and management will mean that diabetes doesn’t need to endanger your child’s health.

What does diabetes mean for my child’s intelligence and learning?

Well managed diabetes does not normally affect a child’s intelligence or ability to learn. But conditions that are not normal can develop when a child has too high or too low blood sugar levels or insulin levels that remain very high or very low. These conditions or complications can affect the brain or the way the brain works. These added risks make it vital that diabetes be treated and managed carefully.

Another reason for careful treatment and monitoring is that less severe diabetic events (such as daily high blood sugar levels) are cumulative (meaning they add up over time). That can affect a child’s ability to learn. Another problem that can occur without treatment are seizures that can be caused by having low blood sugar. Seizures can lead to reduced attention and memory skills. It is vital to maintain your child’s ideal blood sugar levels.

Brown, 1999

Who are some professionals my child may need to see?

Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she works with children.

Pediatric endocrinologist: A doctor who specializes in treating children with conditions and diseases of the endocrine system, the body’s system of glands and hormones.

Nurse clinician: A medical professional who helps in managing a child’s diabetes and in educating children and parents about how to manage the conditions.

Dietician or nutritionist: A medical professional who specializes in analyzing food intake to ensure a child receives all the vitamins and nutrients needed for healthy growth.

Certified diabetes educator: A medical professional who specializes in educating children with diabetes and their families about how to manage their condition and why it is important.

Pediatric psychologist: A doctor trained to evaluate and test children as well as do counseling.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.

What are some websites where I can learn more about diabetes?

National Diabetes Information Clearinghouse (NDIC) http://www.diabetes.niddk.nih.gov/ This website has many easy-to-read publications on diabetes and is organized A-Z by topics and titles.

American Diabetes Association http://www.diabetes.org/about-diabetes.jsp This website has information in English and Spanish. Good information on glucose monitoring.

Diabetes Research Institute (DRI) http://www.diabetesresearch.org/Foundation/ This research program and treatment center at the University of Miami works solely with diabetes.

Juvenile Diabetes International Foundation http://www.jdrf.org

NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/diabetes.html A comprehensive source of links and a service of the U.S. National Library of Medicine and the National Institutes of Health.

National Institute of Diabetes and Digestive and Kidney Diseases http://diabetes.niddk.nih.gov/ This site provides fact sheets, medical information, research and clinical trials.

National Diabetes Education Program (June 2003) http://ndep.nih.gov/ Helping the student with diabetes succeed: A guide for school personnel. This website and guide will help a teacher meet the needs of a child with diabetes. It contains helpful resources and fact sheets for kids.

Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for kids, teens and parents of kids with medical challenges.

What are some special books I can read to my child?

Sarah and Puffle: a Story for Children About Diabetes by Linnea Mulder, Joanne H. Friar (Illustrator), 1992. In this book, Sarah has diabetes and is angry about it. Puffle, her stuffed lamb, comes to the rescue. He is able to talk, dance and make up silly songs. He gives lots of insight about living a normal happy life with diabetes. (Ages 4-8)

Taking Diabetes to School (Special Kids in Schools Series, No 1) by Kim Gosselin, Moss Freedman (Illustrator). An instructional story of a elementary student with diabetes who tells his classmates about the disease. It includes sensitive insight into the day-to-day life of a child with diabetes, 10 tips for teachers and a kid quiz. (Ages 4-8)

Diabetes for Dummies (Paperback) by Alan L. Rubin. The book is divided into sections on “Dealing with the Onset of Diabetes,” “How Diabetes Affects Your Body,” “Managing Diabetes: The ‘Thriving with Diabetes’ Lifestyle Plan” and “Special Considerations for Living with Diabetes.” Each chapter is packed with facts and strategies on such topics as monitoring, battling complications, medications, diet and exercise. If you skim, it’s an introduction to diabetes; if you read it carefully, it’s a textbook. Excellent for teenagers, young adults or parents.

When Diabetes Hits Home (Paperback) by Wendy Satin Rapaport. This book offers practical advice, tools for learning coping skills and stories about struggles to adapt to diabetes. Excellent for teenagers, young adults or parents.