Daily type 1 diabetes (T1D) management can be challenging for adults or children living with the disease, as well as for their parents or caregivers. We asked two diabetes experts, Desmond Schatz, M.D., and Anne Peters, M.D., to share with us the most frequently asked questions they hear in their practices. Their answers will help children and adults alike learn a little more about the disease and how to help manage it better. Both Dr. Schatz and Dr. Peters have seen many people, young and old, with T1D, and they recognize that, although the diagnosis can be scary at first, with the right help and support people with T1D can live long and healthy lives.

FAQs for children with T1D and their parents

Desmond Schatz, M.D., is a pediatric endocrinologist, associate chair of pediatrics, and director of the Diabetes Center at the University of Florida. Dr. Schatz has treated children with T1D for 25 years, and he directs clinical trials aimed at finding a way to prevent and reverse the disease.

No one in our family has diabetes, how did our child get T1D?

Dr. Schatz: Up front we can say it’s no one’s fault that your child got diabetes. We don’t know what causes T1D, although we believe that it results from a complex interaction among genes, the environment, and the immune system. In the United States, the risk of getting T1D is roughly one in 300, but when one family member is affected, the risk increases to one in 20, indicating that genes are involved. But almost 90 percent of people with T1D do not have a family history of the disease. Moreover, T1D is increasing in epidemic proportions, with a 23 percent rise in the prevalence of T1D in people under 20 years old between 2001 and 2009. Worldwide, the number of youth who are being diagnosed with T1D has been growing at an annual rate of about three percent. This rapid increase suggests a strong environmental component. Although the exact causes of T1D are unknown, we do know that T1D is not caused by eating foods with high sugar or anything that you or another family member may have done.

How often should we check our child’s blood sugar levels? What are the warning signs if it goes too high or too low?

Dr. Schatz: Blood-sugar levels change throughout the day and are affected by many factors—what the child ate, physical activity or exercise, insulin dose, stress, pain, and other illnesses all contribute to blood-sugar fluctuations. I tell parents to ask two questions when checking their child’s blood sugar: First, “What do I do now?” meaning, for example, that you may decide to give extra insulin or have the child eat. Second, “What did I learn from this?” meaning that you should look for patterns—for example, learning that the child always has high blood sugar before lunch may indicate a need to eliminate a morning snack, increase the child’s exercise, or change the insulin dose. Typically, parents should check the child’s blood sugar at least before meals (and snacks, if necessary) and before bed, and more frequently if changes to the diabetes management routine are being considered.

Warning signs of high or low blood sugar (hyperglycemia or hypoglycemia, respectively) vary in different children. Symptoms of low blood sugar can include feeling shaky, blurred speech, headache, sweating, tiredness, dizziness, hunger, and changes in behavior, and these symptoms may progress to severe hypoglycemia, which causes loss of consciousness and seizures. Symptoms of high blood sugar may include increased thirst, increased appetite, increased urine, tiredness, blurred vision, and, if ketoacidosis—a life-threatening condition caused by a lack of insulin that forces the body to use fat as an energy source rather than carbohydrates, which in turn releases acidic chemicals known as ketones into the blood—develops, symptoms may include extreme thirst, rapid shallow breathing, nausea, vomiting, abdominal pain, and even a fruity odor.

Our child has always been afraid of getting shots. How can we best manage the insulin injections?

Dr. Schatz: Needle phobia can be a problem at any age, and the most important thing is to empathize with the fear of pricking the fingers or injecting insulin. Methods to ease anxiety about injections should take into account the child’s developmental level and are different for a three-year-old than a 12-year-old. Your diabetes clinical team should be able to help you with specific methods that may work well for you and your child. In general, you should always be calm, confident, upbeat, and reassuring for the child.

You can prepare the child for the shot by reminding him or her that it has to be done, not making too much of a fuss about it, and letting the child know that you will be doing it in 5 to 10 minutes. If you are calm and deal with it in an empathetic way, the child will eventually come to accept the shots. You can try to minimize discomfort with newer needles that have shorter syringes and thinner lancets for blood-glucose checking. For young kids, it may help to distract the child by telling a story, playing games, or watching a video at the same time that you’re checking blood sugar or giving an injection.

Children and parents with severe anxiety or needle phobia may require counseling to help them handle their fear related to insulin injections.

Are there any foods, such as candy, that we shouldn’t let our child eat?

Dr. Schatz: My feeling is that no foods are truly out of bounds. Can your child eat anything that he or she wants? No. Nobody, whether they have diabetes or not, can eat whatever they want, and everyone should eat healthy foods and not overeat. But, certainly something like chocolate cake on a birthday or special occasion is okay. Restricting specific foods can create an undesirable environment and often leads to the child wanting them even more. This can lead to sneaking of food and then to unexpectedly high blood sugars, causing conflict between the parent and child. It’s important to allow your child to choose the foods that he or she wants and then to use those choices as valuable teaching opportunities. You can help him or her understand how many carbohydrates are in those foods, learn what effect the foods have on the child’s blood-sugar levels, and figure out how to adjust insulin doses appropriately. This promotes honesty and enhances the relationship between you and your child.

What do we need to tell the school about managing our child’s T1D away from home?

Dr. Schatz: Every child should have a 504 Plan so that the school cannot refuse to allow your child to do anything that other children can do because of your child’s diabetes. It’s important for parents to speak to the school and teachers and to communicate their expectations. Resources for parents of children with T1D include the JDRF School Advisory Toolkit, the National Diabetes Education Program brochure on helping the student with diabetes succeed, and the American Diabetes Association (ADA) safe-at-school information. Most physicians can also provide a diabetes medical management plan, which is developed by parents in cooperation with their healthcare provider and given to the child’s school.

At what age is it safe for a child to take over his or her own daily T1D management?

Dr. Schatz: It’s very important for a child with T1D to ultimately transition to self-management. The right age for that transition depends on the child’s developmental age and stage, the child’s support system, and the education that the child has received. Good self-management requires an individual to understand the impact of food and exercise on blood-sugar levels, as well as the role of different insulin regimens. I generally use the age of 16 years, since that’s the age at which children are allowed to get a driver’s license. As I see it, T1D is certainly as dangerous—if not more so, if not managed correctly—as driving a car. I expect parents and family members to play an active role at least until the child is 16 years old or until I am totally convinced that the child is capable of self-management. Even then, I instruct youth, as they become adults, to remain in regular contact with me or with diabetes educators so that we can assess their self-management practices.

FAQs for adults with T1D

Anne Peters, M.D., is a diabetologist, director of the Clinical Diabetes Program at the University of Southern California (USC), and professor of medicine at the Keck School of Medicine of USC. Dr. Peters has 25 years of experience treating adults and adolescents with diabetes. Her research interests include technologies and devices for improving treatment of T1D, and transitioning the care of youth with diabetes to adult medicine.

Isn’t T1D a disease that happens to kids?

Dr. Peters: We estimate that about 30 percent of all people with T1D developed the disease as adults. In fact, even people over 90 years old can develop new-onset T1D. Often, people are relieved when they are referred to me and find out that they have T1D and not type 2 diabetes (T2D), because many times, adults who develop T1D are misdiagnosed initially. In children, T1D onset is usually very sudden due to nearly complete loss of the pancreatic beta cells, and these children are treated with insulin immediately. In adult-onset T1D, it may take much longer before the pancreatic beta cells are completely destroyed by the immune system. Adults rarely present with diabetic ketoacidosis. So many doctors initially diagnose adults with T2D and prescribe oral diabetes drugs and lifestyle changes rather than insulin therapy. It can be a relief for people who have been taking pill after pill and not getting better to finally discover that they have T1D, rather than T2D, and begin appropriate treatment with insulin.

It is important for people to realize that we don’t know as much about adult-onset T1D as we do about juvenile-onset T1D, and doctors do not often test for autoantibodies in adults. An adult with diabetes who is lean, has no family history of T2D, or whose diabetes does not seem to respond to oral medications should ask his or her physician for a referral to an endocrinologist or diabetologist.

Now that I have T1D, will my children get it?

Dr. Peters: As with most issues involving T1D in adulthood, not a lot is known about the transmission to children. Whether you were diagnosed with T1D as a child and are now having your own children or you developed T1D as an adult, resources are available for family screening. For example, Type 1 Diabetes TrialNet can screen your family members, including children, to assess their risk of developing T1D in the future. Some people who are found to be at high risk for developing T1D may be eligible to participate in clinical trials to monitor the natural history of the disease or to test potential treatments that might delay or prevent T1D.

Is insulin the only treatment I need for T1D, or do I need something else?

Dr. Peters: Each person’s disease course is different, but I have seen people with T1D who seem to have more immediate beta cell burnout and others whose beta cells seem to burn out more slowly. For individuals with slowly evolving T1D who are transitioning from having some insulin production to no insulin, I’ll often prescribe insulin plus a T2D medication, such as a GLP1 receptor agonist—a drug that binds to the surface of any remaining beta cells and increase the release of insulin into the bloodstream. Some people do well with this type of hybrid therapy, and each individual should explore these options with his or her physician. Although little research has been done on this issue, and it is not currently approved for use in T1D, we do see clinical benefits from continuing with T2D drugs for some selected individuals with adult-onset T1D. In addition, adults who have been newly diagnosed and who have positive autoantibody tests might qualify for clinical trials of new treatment approaches.

How does technology help? Should I use an insulin pump? A continuous glucose monitor?

Dr. Peters: I am an advocate of technology, and I think it can really help based on what a person wants. What I’ve found is that some people with brittle (hard-to-control) T1D do well on a pump and/or a pump and monitor because, as adults, they can learn how to use the technology quickly, and many have real success on pumps. But some individuals are reluctant to try insulin pump therapy at first, and for those people, I’ve found that continuous glucose monitoring can help them better understand their disease and recognize patterns in their blood-sugar levels. Some of those people eventually choose to move on to insulin-pump therapy. However, both tools can be effectively utilized if the individual is interested in using them. By and large, I can help people achieve a reasonable hemoglobin A1c (A1c) level on a pump or on multiple daily insulin injections. It really depends on the individual’s willingness to work with his or her physician and learn the technology.

How can I avoid diabetes complications?

Dr. Peters: Good blood-sugar control is essential. In general, I want people to maintain an A1c level of less than 7.0 percent, with the caveat that avoiding hypoglycemia becomes increasingly important in elderly people with T1D who may have heart disease and other co-morbidities. The most immediate benefit of good blood-sugar control is a lowering of the risk of eye, kidney, and nerve damage. Longer-term benefits include a lowering of the risk of heart attack and stroke. However, as people get older, they tend to have more complications (some because they have T1D and others just because of advancing age), and many may need to take additional medications, such as a statin, an ACE inhibitor, an angiotensin receptor blocker, or aspirin, in addition to undergoing regular screenings for complications. The ADA provides clinical guidelines for risk modification related to diabetic complications.

What resources are available to help me learn how to better manage T1D?

Dr. Peters: Finding a healthcare team in your community that is familiar with managing T1D is vital. I have also found many resources on the internet, but part of the task is to figure out what is helpful in a scientific way and what information is applicable to people with T1D. I encourage people to seek out information from nonprofit organizations, including JDRF, and to explore the internet world of communicators and bloggers, many of whom have interesting things to say about managing T1D.