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Type 1 Diabetes

  • Discovering that your child has diabetes can be upsetting and stressful for the whole family. On these pages, we’ll give you the basic information and skills you’ll need to care for your child, including an understanding of the major forms of the disease—especially type 1 diabetes.

    • Type 1 diabetes is an autoimmune disease—more specifically, a disorder of carbohydrate metabolism—in which the immune system attacks and destroys the insulin-producing cells of the pancreas (called beta cells).
       
    • About one in every 600 children in the United States develops type 1 diabetes. While type 1 diabetes accounts for only about 10 percent of all diagnosed cases of diabetes in the country, it’s one of the most common chronic diseases in children.
       
    • Most of the time, it occurs during puberty, when girls are 10 to 12 years old and when boys are 12 to 14 years old. But it’s increasing in young children under 5 years old.
       
    • Type 1 diabetes tends to run in families. Brothers and sisters of children with type 1 diabetes have about a 10 percent chance of also developing the disease by age 50.
       
    • With proper attention to maintaining the balance among your child’s food, exercise and insulin (if needed), she should not only be OK—she should be able to maintain good general health. But untreated diabetes can be dangerous and lead to damage to nerves, blood vessels, eyes, kidneys and circulation.

    How Children’s Hospital Boston approaches type 1 diabetes
     

    Children’s Diabetes Program provides children and families with a multidisciplinary diabetes team of pediatric endocrinologists, diabetes nurse-educators, staff nurses, registered nutritionists and medical social workers. Our goals are:

    • to help you manage the medical, nutritional and psycho-social needs of your child or teen with diabetes
    • to empower children and young adults with diabetes to live normal lives

    Children’s has been ranked second in the nation in Diabetes by U.S. News & World Report for 2009-10 We provide comprehensive services for infants, children, adolescents and young adults with all types of diabetes. This includes type 1 diabetes, type 2 diabetes, cystic fibrosis-related diabetes, steroid-induced diabetes, post-pancreatectomy diabetes and other rare forms of diabetes.

    Our services include:

    • diagnostic evaluation
    • management of the acute complications of diabetes
    • long-term management and follow-up care

    Our team understands the physical and emotional challenges diabetes presents for both child and family—and we’re here to help you every step of the way.

    Diabetes type 1: Reviewed by Maryanne Quinn, MD, MPH
    © Children’s Hospital Boston, 2011

     

    Diabetes Program

    Boston Children's Hospital
    300 Longwood Avenue
    Boston MA 02115

     617-355-7476




    Boston Children's Hospital at Lexington
    482 Bedford Street
    Lexington MA 02420


     

    781-216-2999




    Boston Children's Hospital at Peabody
    1 Essex Center Drive, 4th Floor
    Peabody MA 01960


    781-216-3400      




    South Shore Hospital
    851 Main Street, Suite 6
    Weymouth MA 02190


    781-216-3800      




    Caritas Norwood Hospital
    800 Washington Street
    Norwood MA 02062


    781-216-2550




    MetroWest Medical Center
    115 Franklin Street
    Framingham MA 01702


     

    508-875-5189



  • Because our research informs our treatment, our diabetes team is known for our innovative treatments and science-driven approach. Children’s Hospital Boston is home to the world’s most extensive pediatric hospital research enterprise, and we partner with elite health care and biotech organizations around the globe. But as specialists in family-centered care, our physicians never forget that your child is precious, and not just a patient.

    In dealing with your child’s diabetes, you probably want to know the basics about what diabetes is, and how type 1 diabetes differs from other forms of the disease.

    What is diabetes?

    Diabetes (diabetes mellitus) is a lifelong condition that occurs when the body doesn’t make enough insulin, or when the body doesn’t respond properly to the insulin it makes. There are many forms of diabetes mellitus, several of which have undergone name changes as the disease has become better understood.

    • type 1 diabetes: Formerly known as “juvenile” or “insulin-dependent” diabetes,type 1 diabetes is caused by the immune system’s failure to recognize the beta cells as belonging to the body, so it attacks and destroys them. This is why type 1 diabetes is considered an autoimmune disease. Children with type 1 diabetes must take insulin injections every day.
    • type 2 diabetes: Formerly known as “adult onset” or “non-insulin dependent” diabetes, type 2 diabetes typically occurs in people who are overweight, physically inactive and over age 40, although more and more children are developing type 2 diabetes, possibly because of childhood obesity. Some children need insulin; others can control their diabetes with healthful eatingand exercise, or oral medicines (hypoglycemic agents).
       
    • MODY (maturity onset diabetes of youth): a form of diabetes that has been diagnosed before the age of 35 years in at least three generations of family members. Doctors have identified many specific genetic defects (mutations) in such families. Some patients who have MODY need insulin. Others can effectively manage their condition with diet and/or oral medicines.
    • secondary diabetes: This is a form of the disease in which the beta cells are destroyed, not by the body’s immune system, but by cystic fibrosis (“secondary to cystic fibrosis”), pancreatic surgery or another cause.

    Note: diabetes insipidus is a very different condition from diabetes mellitus.

    Is there more than one form of type 1 diabetes?

    There are two forms of type 1 diabetes:

    • immune-mediated diabetes: an autoimmune disorder in which the body’s immune system destroys, or attempts to destroy, the cells in the pancreas that produce insulin. This is the most common form of type 1 diabetes, and it accounts for most cases.
       
    • idiopathic type 1: refers to rare forms of the disease with no known cause

    What is insulin?

    Insulin is the hormone that allows glucose to enter the cells of the body to provide fuel in the form of glucose. Without insulin, glucose builds up in the bloodstream, starving the body’s cells. Children with type 1 diabetes must take daily insulin injections and must regularly monitor their blood sugar levels.

    • Insulin is a protein hormone made by the beta cells of an area of the pancreas (an organ that lies behind the stomach).
    • Insulin is needed to help glucose (sugar) enter the cells of the body.
      • When glucose enters the cells, it can be used to produce energy, or it can be stored in the liver and muscles (as glycogen) for later use.
    • If the body doesn’t produce its own insulin, it must be injected so the body can function properly.
      • Insulin can’t be taken by mouth because the digestive system would destroy it.
    • Insulin for injection comes from several sources.
      • Human insulin is the kind most commonly used today to treat diabetes. It’s made in special bacteria (by genetic engineering) so that it’s identical to the insulin the human body produces

    How and when should I give insulin to my child?

    Your child’s diabetes team will help you decide what types of insulin your child should use, and when you should give it.

    • Your child’s nurse will teach you how to measure and inject the insulin.
       
    • Your team will also give you tips for:
      • the best time(s) in the day to give insulin—the timing of meals, as well as the pre-meal blood glucose level, may affect the time you should give the injection
      • storing and transporting your child’s insulin

     

    Does having type 1 diabetes put my child at risk for other conditions?

    Unfortunately, children who have diabetes are also at risk for other autoimmune conditions such as autoimmune thyroid diseaseceliac disease and, rarely,Addison’s disease.

     

    What’s a healthful diet for kids with type 1 diabetes?

    Proper meal-planning is very important if your child has diabetes, since the type and amount of food your child eats affects her blood sugar levels. If she eats too much, her blood sugar may go up too high. If she skips meals, her blood sugar may go too low. Good blood sugar control requires a balance of food, exercise and medication. Healthy meals include foods that contain the right amounts of carbohydrates, protein and fat.

    Carbohydrates (“carbs”) are an important source of energy for kids, and they affect the body's blood sugar the most since the body turns carbohydrates into blood sugar. If your child eats too many foods with carbs, her blood sugar can go too high. About half the calories your child eats should come from carbs, and a certain amount of carbohydrates should be included with each meal and snack. Your child’s dietitian can help you decide how much carbohydrate your child needs each day.

    Sugar is a carbohydrate. It doesn’t affect your child’s blood sugar any differently from other carbs. Your child can eat sweets and sugars if they’re counted as part of her daily carbohydrate intake. (Sweets don’t have many vitamins or minerals, so your child should eat them only in small amounts.)

    Proteins and fats don’t affect the body’s blood sugar level as much as carbs do. But the amount of protein and fat in your child’s diet may need to be counted, since it’s important for her to eat them in appropriate amounts. Too much fat can increase your child’s risk for heart disease and may make it difficult for her to maintain a healthy weight. Your child’s dietitian can help you decide how much protein and fat your child needs.

    How can I monitor my child’s diabetes day-to-day?
     

    Checking your child’s blood glucose (sugar) levels every day will tell you if she’s maintaining a good balance of insulin, food and exercise.

    • Your child’s diabetes doctor or nurse educator will recommend the best goal or target range for your child’s blood glucose levels. If these levels are in the target range most of the time, this means that her diabetes is well controlled.
       
    • It’s important to measure your child’s blood glucose levels at certain times during the day. Your diabetes team will give you specific recommendations on when and how often you should check her levels.
       
    • You’ll use a blood glucose meter to measure the amount of glucose in a drop of your child’s blood, in order to check if her blood glucose levels are within her goal range. Your diabetes team member will recommend a meter for your child and teach you how to use it. These are small and simple to use—and involve just a tiny pinprick.

    What about emergencies?

    We’ll teach you how to cope with emergency situations in which you may need to administer extra insulin (“booster shot”) or check your child’s urine for ketones (toxins released by the body’s breakdown of fat caused by a lack of sugar to the cells of the body. We’ll help you recognize signs that your child may need emergency attention.

    What about exercise for kids with type 1 diabetes?

    Exercise is always important for growing children, regardless of diabetes. When exercise is combined with the right amounts of food and insulin, it will help keep your child healthy, and her blood glucose levels will remain in balance.

    In general, exercise tends to lower blood glucose levels.

    • When your child exercises, her muscles use glucose at an increased rate to provide energy.
    • Exercise increases the body’s sensitivity to insulin.
      • The insulin has a greater effect on lowering blood glucose levels when a child is exercising, and even for some time after the exercise is over.

    To avoid low blood glucose when exercising:

    • Plan vigorous activities for roughly the same times each day.

    • Plan activities to follow meals and snacks.

    • Check your child’s blood glucose level before and after exercise.

    • Add an extra snack before exercise.

    • Plan activities and snacks according to when insulin starts to work, when its peak effect is reach and how long it works to lower blood glucose levels.

    Your diabetes team will help you figure out how insulin works in your child; what types of snacks are most helpful before exercise; how to check your child’s glucose; and any other questions you may have—we’re here to help.

    What are the dangers of not treating type 1 diabetes?
     

    Uncontrolled type 1 diabetes can be dangerous. It can lead to serious, even life-threatening, problems such as:

    • kidney damage (nephropathy)
    • diabetic retinopathy
    • poor circulation (especially of the feet)

    What are some complications associated with diabetes?

    People who have diabetes are also at risk for other autoimmune conditions such as autoimmune thyroid disease, celiac disease and, rarely, Addison’s disease.                                                     

    Although type 1 diabetes can cause many different problems, there are several key complications that if uncontrolled, can cause emergencies.

    • hypoglycemia (low blood sugar, “insulin reaction”):
      • occurs when blood sugar drops too low—so the body doesn’t have the source of energy it needs to function properly
      • can result from:
        • too high an insulin dose
        • a missed meal or snack
        • more physical activity than usual
        • sickness with vomiting and/or diarrhea
      • if unchecked, can result in a low blood glucose medical emergency with loss of consciousness or seizure
        • treated by injecting the hormone glucagon
      • common signs and symptoms include shakiness, sweating, weakness, blurry vision, rapid heartbeat
      • If your child has signs or symptoms of hypoglycemia, measure her blood glucose level (if possible) and give her a fast-acting carbohydrate, such as fruit juice, hard candy or raisins.
         
    • hyperglycemia (high blood sugar):
      • occurs when blood sugar is too high
      • can be a sign that diabetes is not well controlled
      • caused by build-up of glucose in the bloodstream; possible causes:
        • not enough insulin—glucose can’t enter the body’s cells
        • too much food, wrong kinds of food
        • less physical activity than recommended
        • sickness
      • symptoms can resemble those of diabetes—excessive urination, bedwetting, weight loss, thirst, yeast infections, nausea and vomiting
      • If your child has signs or symptoms of hyperglycemia
        • measure her blood glucose level

        • check her urine for ketones

        • check with your diabetes team to see if you should administer a “booster shot” of extra insulin

      • If your child has signs or symptoms of hyperglycemia, PLUS a rapid heartbeat and deep, rapid breathing, call your doctor immediately, since she may be in the medical emergency called diabetic ketoacidosis.
    • diabetic ketoacidosis (diabetic coma):
      • loss of consciousness due to untreated or under-treated diabetes
        • lack of sugar to the cells of the body cause the body to break down fats, releasing toxins (ketones) into the bloodstream faster than the kidneys can get rid of them
      • Diabetic ketoacidosis is a serious condition that requires immediate medical attention; children become very sick; call your doctor if your child has ketones in her blood.

     

    Insulin, food and exercise: How do we find the right balance?

    Many factors can affect your child’s blood sugar level, including:

    • exercise
    • some foods
    • some medications (non-diabetic)
    • illness, fever

    The key to maintaining your child’s blood sugar in a normal range is to balance your child’s insulin dosage, type and amount of food intake and level of exercise. Your diabetes team will help you determine a healthful regimen for your child that balances these key elements.

    How do we cope with traveling and vacationing?

    Traveling with a child who has diabetes requires some advance planning—but it is doable, and your child’s condition doesn’t have to slow up the family’s plans. Joseph Wolfsdorf, MD, associate chief of Children’s Division of Endocrinology, has written a helpful article called Traveling with Diabetes. Wolfsdorf’s article offers tips for packing, airline travel, spending time outdoors, dining out, transporting insulin, wearing an ID bracelet, packing an emergency kit and lots more.

    Your diabetes team will give you a great deal of helpful information about helping your child manage other kinds of stays outside your home when you’re not around—such as sleepovers, school, day care and summer camp (including diabetes camp programs). Here, too, some planning and communication smooth the way.

    Will my child be OK?

    With proper attention to maintaining the balance among your child’s insulin, food and exercise, she should not only be OK—she should be able to maintain good general health. But untreated diabetes can be dangerous, and can lead to damage to nerves, blood vessels, heart, eyes, kidneys and circulation.

  • At Children’s Hospital Boston, we know that the first step in treating your child is forming an accurate and complete diagnosis.

    Your child’s extreme thirst and frequent urination can often be a clue. To confirm a diagnosis, her doctor may order blood and urine tests including:

    • glycated hemoglobin (A1C) test: This blood test indicates average blood sugar level for the past two to three months.

    • random blood sugar test: A blood sample is taken at a random time.

    • fasting blood sugar test: A blood sample is taken after an overnight fast.

    • To distinguish between type 1 and type 2 diabetes, your child’s doctor may also check for autoantibodies in the blood that are common in type 1 diabetes.

    • Children’s diabetes team also tests for the presence of ketones (byproducts from the breakdown of fat in children without enough insulin) in the urine or blood. When present, ketones also suggest that the child has type 1 diabetes.

    Since test results should be confirmed with a second test on a different day, it’s likely that your child will have blood drawn more than once.

    Is it diabetes?

    Your child will be diagnosed with diabetes if her:

    • blood glucose is higher than 126 mg/dL first thing in the morning before eating or drinking for at least eight hours

    -or-

    • blood glucose is greater than 200 mg/dL (more than once) after a meal or snack
       
  • How do you treat diabetes?

    Insulin and other treatments

    Children with type 1 diabetes must have daily injections of insulin to keep the blood sugar level within the normal range. In addition to insulin injections, other ways of managing your child's diabetes that her team may recommend include:

    • eating a healthful diabetes diet (to manage blood sugar level)
    • exercise (to lower—and help the body use—blood sugar)
    • regular blood check (for blood sugar [glucose] levels)
    • regular urine check (for ketone levels)

    What’s a healthful diet for kids with type 1 diabetes?

    Proper meal-planning is very important if your child has diabetes, since the type and amount of food your child eats affects her blood sugar levels. If she eats too much, her blood sugar may go up too high. If she skips meals, her blood sugar may go too low. Good blood sugar control requires a balance of food, exercise and medication. Healthy meals include foods that contain the right amounts of carbohydrates, protein and fat.

    Carbohydrates (“carbs”) are an important source of energy for kids, and they affect the body's blood sugar the most since the body turns carbohydrates into blood sugar. If your child eats too many foods with carbs, her blood sugar can go too high. About half the calories your child eats should come from carbs, and a certain amount of carbohydrates should be included with each meal and snack. Your child’s dietitian can help you decide how much carbohydrate your child needs each day.

    Sugar is a carbohydrate. It doesn’t affect your child’s blood sugar any differently from other carbs. Your child can eat sweets and sugars if they’re counted as part of her daily carbohydrate intake. (Sweets don’t have many vitamins or minerals, so your child should eat them only in small amounts.)

    Proteins and fats don’t affect the body’s blood sugar level as much as carbs do. But the amount of protein and fat in your child’s diet may need to be counted, since it’s important for her to eat them in appropriate amounts. Too much fat can increase your child’s risk for heart disease and may make it difficult for her to maintain a healthy weight. Your child’s dietitian can help you decide how much protein and fat your child needs.

    In addition to insulin injections and eating a healthful diet, other ways of managing your child’s diabetes that her team may recommend include:

    • exercise (to lower—and help the body use—blood sugar)
    • regular blood check (for blood sugar [glucose] levels)
    • regular urine check (for ketone levels)

    Our registered nutritionists and dietitians will work with you to develop a meal plan based on your child’s specific needs. And our diabetes nurse-educators will work with you to increase your knowledge of, and confidence in, how best to care for your child at home.                                                        

    Who will be on my child’s diabetes team at Children’s?

    Children’s multidisciplinary team members include:

    • pediatric endocrinologists: medical doctors who specialize in the care of children with disorders that affect any of the body’s hormone-producing glands, such as diabetes mellitus. The endocrinologist supervises the work of the diabetes team and is responsible for your child’s care.
       
    • diabetes nurse-educators: nurses who specialize in teaching families how to care for a child who has diabetes. The nurse educator, together with your child’s staff nurses, teach you about managing your child’s diabetes. After your child returns home, the nurse educator continues to teach and support you in our outpatient Diabetes Program, and is available by phone for urgent advice.
       
    • staff nurses: nurses who help while your child in the hospital. The staff nurses also work closely with the nurse educator in the outpatient Diabetes Program. Together, they’ll make sure you and your child learn all the basics for caring for your child safely at home.
       
    • registered nutritionists and dietitians: nutritional professionals who’ll help you develop a healthful diabetic meal plan that meets your child’s nutritional needs. After your child has left the hospital, she’ll have a follow-up appointment with the dietitian, who will also be available by phone to answer your questions.
       
    • medical social workers: psycho-social specialists who help families deal with the difficult feelings around living with diabetes. Your social worker can offer guidance about your child’s behavior, provide you with information about community resources, and help with the transition from hospital to home.

    Complications and emergencies

    Your diabetes team will teach you how to cope with emergency situations in which you may need to administer extra insulin (“booster shot”) or check your child's urine for ketones (toxins released by the body's breakdown of fat caused by a lack of sugar to the cells of the body. We'll help you recognize signs that your child may be in crisis and may need emergency attention.

    People who have diabetes are also at risk for other autoimmune conditions such as autoimmune thyroid disease, celiac disease and, rarely, Addison's disease.                                                    

    Understanding your child's feelings and condition

    Regardless of your child's age, a diagnosis of diabetes can be devastating.

    If your child is very young, she may not quite understand all the life changes that may come with a diagnosis of type 1 diabetes. Your child may experience feelings of:

    • vulnerability
    • anger
    • difference from peers (“Why me?”)

    If your child is a teen with diabetes, the normal challenges of teenage years can even more intense. Teens want to belong, and being different in any way from one's peers can be emotionally stressful.

    Even a teen who's previously complied very well with her diabetes management plan may now:

    • become rebellious and refuse to comply
    • experience denial of the disease
    • become aggressive in reaction to the stress of managing diabetes

    Helping your teenager with her blood sugar control is especially hard during adolescence. Researchers believe the growth hormone produced during adolescence that stimulates bone and muscle growth may also act as an anti-insulin agent. Blood sugar levels become harder to control—resulting in blood sugar levels that swing from too low to too high. This lack of control over blood sugar levels can be very frustrating for your teen.

    Family teamwork is the key

    Although a child who's diagnosed with type 1 diabetes needs supervised medical care, the ideal relationship between parents and child is one of interdependence—with family members working together as a team to help the child live normally and happily.

    Type 1 diabetes is a chronic, lifelong disease that can't be prevented and is usually not predictable. Children and adults with type 1 diabetes must take daily insulin to manage their condition. It's a challenge that can sometimes be frustrating, but the condition needs to be managed consistently to avoid damage to nerves, blood vessels, heart, eyes, kidneys and circulation.

    With your encouragement and our diabetes team's guidance, your child will learn how to take care of her diabetes. Your child's increasing independence will improve her self-esteem—and her good habits will carry over into adulthood.



  • Because diabetes can require lifelong management, researchers at Children’s are investigating the earliest stages of the disease in order to understand how the disease develops and how it can be treated. Areas of research focus on:

    • how to keep the insulin-secreting beta cells alive as a method both for treatment and prevention of Type I diabetes
    • tempering autoimmune activity in Type I diabetes
    • long-term follow up of diabetic patients for quality of life
    • genetic factors for obesity, which can lead to Type II diabetes
    • genetic factors for diabetes-related kidney failure
    • predictors related to glycemic control

    Diabetes Prevention clinical trial

    Children’s Hospital Boston’s Diabetes Program is participating in the Diabetes Prevention Trial-Type 1 (DPT-1)—an ongoing nationwide clinical trial to determine whether type 1 diabetes can be prevented or delayed in people at risk for developing the disease. Preliminary studies conducted in animals have shown that it may be possible to prevent type 1 diabetes with oral insulin or insulin by injection.

    In animal studies, low doses of insulin by injection have successfully prevented diabetes, and in human studies, insulin injections have preserved the insulin-producing cells in people with pre-diabetes or in the early stages of diabetes.

    If you’re interested in participating, or have questions about the clinical trial, please contact Dr. Joseph Wolfsdorf, Director of Children’s Diabetes Program, at the Division of Endocrinology, 617-355-7476. Learn more about the trial.

    Tracking type 1 diabetes in Massachusetts
     

    In addition to developing a hospital registry, researchers are also working with the Commonwealth of Massachusetts to track the increase of type 1 diabetes in the state.

    As part of the effort to understand the development of genetic diseases, Children’s has created induced pluripotent stem (iPS) cells—cells taken from patients and reprogrammed to look and function like embryonic stem cells.

    Our scientists are using these iPS cells to model the genetic diseases of the patients from whom they were taken, including type 1 diabetes patients.

    Does air pollution contribute to diabetes?
     

    A link between air quality and diabetes may not seem intuitive, but a national population-based study from the Children’s Hospital Informatics Program finds a strong, consistent correlation—even after adjustment for variables like obesity.

    Researchers led by John Pearson and John Brownstein, PhD, focused on fine particulates 0.1 to 2.5 nanometers in size (known as PM2.5), amain component of haze, smoke and car exhaust. They obtained county-by-county data on PM2.5 pollution from the Environmental Protection Agency (EPA), and crunched it against health data from the Centers for Disease Control and the U.S. Census.

    After adjustment for known diabetes risk factors, including obesity, exercise, geographic latitude, ethnicity and population density, the level of PM2.5 pollution was strongly predictive of diabetes prevalence. Even at concentrations below the EPA safety limit, counties with highest PM2.5 levels had 20 percent more diabetes than counties with the lowest.

    The findings jive with prior laboratory studies. Obese mice exposed to PM2.5 show an increase in insulin resistance, a precursor to diabetes. They also have increased blood markers of inflammation, which may contribute to insulin resistance.“We didn’t have data on individual exposure, so we can’t prove causality, and we can’t know exactly the mechanism of these peoples’ diabetes,” acknowledges Brownstein. “But pollution came across as a significant predictor in all our models.” (Diabetes Care, October.)

    Autoimmune disease research collaboration

    As many as five percent of Americans suffer from some form of autoimmune disease, which includes lupus, rheumatoid arthritis, multiple sclerosis and type 1 diabetes. The Immune Disease Institute, a non-profit research and educational institution, is working in collaboration with Children’s Hospital Boston to accelerate ground-breaking research in immunology and inflammation and to translate basic discoveries into the clinical setting. Their autoimmunity research centers on discovering what controls the interaction of immune cells with each other and understanding how genetic variation contributes to autoimmunity.

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