Living with Diabetes. A Guide for Families of Children and Adolescents with Diabetes. The Johns Hopkins Medical Institutions

Transcription

1 Living with Diabetes A Guide for Families of Children and Adolescents with Diabetes The Johns Hopkins Medical Institutions

2 Introduction There are two types of diabetes Survival Skills Learning to monitor: What your body can tell you The Honeymoon Period Insulin About injecting Determining dose the thinking part Pumping What to eat and when Physical activity Short Term Complications Long Term Complications School and diabetes When you get sick How you feel about diabetes Growing up with diabetes Continuing care Resources contents

3 LIVING WITH DIABETES: A Guide for Families of Children and Adolescents with Diabetes You or your child has been diagnosed with type 1 diabetes. This can be a frightening, confusing, and overwhelming time. You may feel sad or angry or afraid, stunned, or even guilty. You might think that your life will never be the same again. It s true, diabetes will change your life, and your family s. But our lives are what we make them, and diabetes means adjustments but not limitations. This booklet will help you understand diabetes, what you can do about it and how to live with it, and give you some of the tools you need for good diabetes care. This is not a how-to booklet you will receive at least 3 days of education from the nurses, dietitians, and doctors to help you learn the basics of diabetes. What we want to do here is give you the big picture, provide a basic understanding of what it means to have diabetes, what your care will involve, and what your own role will be. And we want to reassure you that you are starting on a path that many, many young people have traveled successfully. Introduction There is no doubt that diabetes is a serious disease that you will have to think about in nearly every aspect of your daily life. But there is also no doubt that people with diabetes live healthy, active, productive, and long lives. There is little (if anything) that you can t do in your life because you have diabetes. People with type 1 diabetes can and do become professional athletes and movie stars, rock musicians, even Miss America, to name just a few of the possibilities. While you might feel bewildered now by all the tasks 1

4 involved in daily diabetes management, these activities will soon become second nature to you. Families learn to work together for a common goal. Children with diabetes become involved in their own care at young ages, and as they move through adolescence, responsibility for the various tasks and decision-making involved with diabetes will gradually shift from parent to child. However, it is important for parents to continue to stay actively involved in supervising daily diabetes management. Successfully controlling diabetes is a balancing act. You need to balance food and insulin, as well as less easily measurable factors such as stress and emotions and physical activity. Because diabetes affects so many different aspects of a person s life, treatment can t be confined to a doctor s office. You will have to work together with your health care providers to best treat the disease. You will be partners in care. Your doctor, nurse educator, nutritionist, and other members of the diabetes team will get you started, give you instructions and guidelines, and remain in consultation. When you first leave the hospital, you will talk with them daily. But soon you and your parents will be making countless daily decisions for yourself that affect diabetes care. The knowledge and technology of the 21st century have brought medications, monitoring tools, and dietary management to a point that allows everyone with diabetes to live his or her life to the fullest. There is still no cure for diabetes, although it certainly may come in the lifetime of a young person now being diagnosed. But new types of insulin and insulin pumping offer more flexibility and are increasingly popular options for many young people. In the following pages you will learn more about these and other details of treatment, and about how to fit your treatment into your home life, your school life, and your social activities. We will explain what type 1 diabetes is, what will be going on while you re in the hospital, what you will need to 2

5 know when you go home. We will also give you an introduction to some of the issues you ll be dealing with in the weeks and months and years to come going to school, having fun, growing up, staying healthy. Type 1 diabetes-- what is it and how do you get it? Diabetes is a chronic disease in which the body does not make or properly use insulin. Insulin is a hormone needed to convert the food we eat into the energy that fuels our bodies. As part of the digestive process in our stomachs and intestines, food is turned into sugar (to be more precise, a specific type of sugar called glucose), protein, and fat. These are carried by our blood to the cells of the body. In order for glucose to get into cells and be used, it must be transported by insulin. Sometimes insulin is compared to a key that unlocks a cell so that glucose can get in. Insulin is made by the pancreas, an organ in your abdomen that is part of the digestive system and makes digestive juices as well as insulin and other hormones. In a person with healthy insulin production, the pancreas responds automatically when you eat and your body starts converting the food to glucose, insulin is made, enough to take care of the amount of food being converted to glucose. This keeps a person s blood glucose level relatively steady throughout the day. In people with diabetes, the pancreas does not do its job, and the insulin is not available to take glucose into cells. As a result, levels of glucose in the blood become very high. At a certain point, the glucose spills into the urine. Insulin deficiency can also affect protein and fat metabolism. Fat is burned by the 3

6 body when there is insufficient insulin to allow sugar to be burned for energy needed by the body. Normal fasting blood glucose, measured when you wake up in the morning, ranges from approximately 70 to 120 milligrams per deciliter of blood (mg/dl). It is not unusual for children and teens diagnosed with diabetes to have levels of 500 mg/dl or even higher. It only takes a random blood sugar above 200 to diagnose diabetes. Diabetes can affect every organ system in the body. Insulin deficiency can make a person very sick, both in the short term, with a potentially life-threatening condition called diabetic ketoacidosis (DKA); and more long-term, with complications that can affect the heart and blood vessels, kidneys, eyes, and other body systems. And low blood glucose is not unusual, as people with diabetes try to keep their levels in the relatively tight range. While these potential complications can be one of the scarier things about diabetes, what s most important to know about them is that they can be prevented. We ll give you more details about this in the section of this booklet about complications. There are two types of diabetes. In type 1, the pancreas completely stops producing insulin. In type 2, some insulin is still produced, but it is not enough or the body can t use it as needed because of insulin resistance in the cells. Type 2 usually develops in people who are older and overweight and often have a family history of the disease. In many cases, it can be controlled with oral medications (pills), and people with this form often do not need to take insulin shots. Type 2 diabetes is much more common it accounts for about 90 percent of all cases of diabetes diagnosed each year in 4

7 this country. Increasingly, type 2 diabetes is now being diagnosed in children. These cases are usually in children who are overweight. Type 1 is the form of diabetes that we usually see in children and teenagers. However, it can start in adults. Sometimes it takes time and several blood tests for the doctor to know whether you have type 1 or type 2. However, if you are not overweight and your symptoms have come on rather suddenly, chances are it is type 1. Because their pancreases have completely stopped producing insulin, people with type 1 diabetes are called insulin dependent they must take insulin to live and be healthy. This is done by injection you cannot take insulin by mouth because it would not be able to do its work if it went through your stomach and intestines. Scientists have been looking for years for a way of taking insulin that would not involve needles, and there are some promising possibilities on the horizon. For example, in experimental programs, some people are having success with breathing in their insulin through an inhaler. Scientists believe that type 1 diabetes is partly hereditary, with several different genes involved. But a person does not inherit the disease itself, just the susceptibility to it. It is classified as an autoimmune disorder, a sort of allergy to one s self in which your own immune system attacks a part of your body. Other autoimmune disorders include rheumatoid arthritis, multiple sclerosis and lupus. We don t know exactly how or why someone gets type 1 diabetes. The cells in the pancreas that make insulin (called beta cells or islet cells) are thought to deteriorate gradually, over a period of months or years. When these cells get to the point where they are only producing 20 percent or less of the insulin the body needs, the symptoms of diabetes develop and the disease is diagnosed. Often parents and children observe that the symptoms began shortly after a bout with the flu or a cold or other infection. This is because more islet cells may have been destroyed with the stress of an illness. 5

8 At this point you probably know the symptoms of diabetes as well as anyone. The main ones are frequent urination and excessive thirst. Many children also have a weight loss shortly before diabetes is diagnosed. If the diabetes has progressed to ketoacidosis, you may also experience vomiting and feel very tired. If you feel alone or isolated by your diabetes diagnosis, it might help to know that there are many other children and teens facing what you face. Every year, about 30,000 children in this country are diagnosed with type 1 diabetes, and there are currently more than 1 million people in the U.S. and more than 5 million worldwide living with the disease. Survival Skills Some people who are diagnosed with type 1 diabetes are so sick usually with DKA that they need to be in the hospital for treatment and monitoring. For others, a brief hospital stay is advised so that you can have expert help learning what you need to know about managing diabetes, and how to perform the various tasks that will now be part of your daily life what we call "survival skills." We divide diabetes education into two areas. First is technical, or learning the mechanics of injecting insulin, measuring blood glucose, and the other necessary tasks. Second is cognitive, or understanding the principles behind counting carbohydrates and figuring food amounts and insulin dose and knowing how to respond to special situations, which can range from birthday parties to illnesses. We find that many children master the technical skills sooner than they understand the principles. By the time most children are 10, they are able to give themselves injections. This means you may be able to help your parents with monitoring and injections, but an adult will have to be an active participant in these processes and in figuring out what you should eat and how much insulin you should get. 6

9 By the time you leave the hospital, you (or your parents) will be familiar with how to: Check blood glucose Prepare and give insulin injections Manage food intake and make meal plans Manage exercise and balance physical activity with insulin needs Manage hypoglycemia or low blood glucose Prepare a glucagon injection for severe hypoglycemia Check urine ketones Keep written records of blood sugars and insulin doses In the hospital, you will work with the dietitian to select choices for your meals. Since the amounts are pre-measured for you, this will help you start to get an idea of what different portions contain, and to count the carbohydrates that play a large part in determining your insulin dose. Before every meal, bedtime snack and during the night, you will check your blood glucose, and keep a written record of the result. Monitoring overnight between 2 AM and 3 AM helps to prevent any hypoglycemia. Also, your urine may need to be checked for ketones, byproducts in your body that turn up when there is not enough insulin and the body has to burn fat for energy. Ketones can be a sign of serious illness. We will explain more about monitoring for blood glucose and ketones in the next section. When you were admitted to the hospital, if you were sick, you probably had an intravenous line placed in your vein, and that was how your first doses of insulin were given. Usually within a day of coming into the hospital, you will switch from IV insulin to injections with a syringe and needle. Your nurse will teach you and your parents exactly how to give 7

10 injections. Through the course of your hospitalization, you and your parents will work with your doctor and nurse to change insulin doses as necessary, in response to your blood glucose levels and the food you eat. This will be explained in more detail in the section below about insulin. You will also learn how to treat low blood glucose with food or fluids or a glucagon injection in very serious cases. Much of the information you need to consider in controlling diabetes is related to what you eat. While you are in the hospital you will meet with a dietitian who will explain some basic nutritional concepts and how you need to apply them to your life. The dietitian might recommend that your meals and snacks be scheduled so that you are eating about the same amount of food at about the same time every day. When you eat, you will learn, is nearly as important as what you eat, because the food has to be balanced against the timing of the action of the insulin you take. Timing issues are dependent on the types of insulin used. Being diagnosed with diabetes is no small thing. We know your emotions are in an uproar and many of our patients tell us of the feeling of being overwhelmed by this disease and what it requires. In the hospital, you will have the opportunity to speak with a social worker who can talk with you and your parents about your feelings, about coping with diabetes and the adjustments you ll have to make in your life. He or she will also help you figure out how to fit your diabetes care into the school day. You will also be given a referral to a home health care agency, which will send a visiting nurse to your home for a couple of hours a day the first day or two you are home from the hospital, to help you. You will be given prescriptions for all the medical supplies you need at home. You can fill the prescriptions at the hospital or a pharmacy near your home. It is a good idea to go over the supplies with your nurse before you leave to make sure you have everything you need. The supplies include a glucose meter, test strips, lancets and syringes; urine ketone 8

11 strips; glucagon emergency kits for treatment of severe low blood glucose; and whatever types of insulin your doctor has prescribed. Most people use a combination of long-acting insulin and short-acting insulin. The nurse will tell you how to get a medical identification product, which identifies you as a person with type 1 diabetes. This is in case you become ill when you are with people who don t know you have diabetes. It can be a bracelet, necklace, watch tag, shoelace tag whatever makes you comfortable. Medical identification is particularly important for people who take insulin, since lows are not uncommon, and they may cause confusion so that you can t help yourself the way you need to. Another safety issue you will have to deal with when you go home is disposing of used needles and lancets, what we call "sharps." All used syringes and lancets should be put inside a sturdy plastic container with a lid, like a bleach or laundry detergent bottle. Don t break, bend or put the cap back on needles. This may cause you to hurt yourself. When the container is full, cover it tightly, tape it securely shut, and throw it out with your regular trash. Now let s take a more detailed look at the survival skills and see how you will apply them in your daily life when you leave the hospital. Learning to monitor: What your body can tell you Measuring blood glucose is quick and easy. Checking for ketones is equally simple. Conscientious monitoring and record-keeping are a big part of what keeps you in control of diabetes. And being in control is what prevents complications 9

12 from ever happening. You will begin monitoring when you are in the hospital and it will be a regular part of every day from now on. Testing and keeping records will give you, your parents, and your diabetes health care team an accurate picture of where you are, from hour to hour and day to day. Your meter might keep track of readings electronically, but keeping a writ - ten record is still very important. This is the information you will use to troubleshoot problems and plan treatment strategies. Most meters come with a logbook in which to keep track of your readings and other relevant information (for example, insulin doses and carbohydrate intake). We will provide you with a chart for recording information. When things do not seem to be going well when your blood glucose is consistently too high or too low that is the time to monitor even more often, so you can pinpoint a problem and figure out how to solve it. A blood glucose reading is a reflection of where your blood glucose is at a given moment. It is not a test. You can t pass or fail. Of course, we re not pretending that some readings don t make you feel better than others. But the less satisfactory readings, whether high or low, are not bad report cards. Rather, they are the information that lets you know how different foods and physical activities affect you, and helps you figure out what insulin doses you need to get back to your target range. You get the drop of blood you need for the reading by pricking yourself with a spring-loaded lancet. There are many different brands of lancets, and they are similar to each other. You can prick your fingertip or your arm. If you prick your fingertip, it works better and you ll feel less sensation on the sides of your fingers, rather than the middle. Pricking the arm is a relatively new technique that many people like because it gives you a much larger surface on which to spread out the many pricks a person with diabetes needs to make. This type of mon- 10

13 itoring is referred to as alternate site monitoring. Wash your hands or your arm before pricking not only does this make you clean to minimize the possibility of infection, it helps the blood flow a little easier. But the amount needed is really very small. We recommend monitoring blood sugars 4 or more times per day. Monitor before meals and before bedtime snack. Also, in the beginning it is important to monitor overnight between 2 and 3 am to make sure there are no problems with overnight hypoglycemia. Many parents worry about the blood sugar dropping overnight and doing a check can provide reassurance and allow you Blood Monitoring Meters to go back to sleep. If the blood sugar is below 100 it would be a good idea to give 15 grams of carbohydrate and recheck the blood sugar in 15 minutes to make sure it has improved. Your doctor and nurse educator will work with you to set your targets for blood glucose monitoring. Another blood test gives you a wide-angle-lens look at glucose control, compared to the narrow snapshots of daily monitoring. Glycohemoglobin is the term for the glucose that becomes attached to hemoglobin, a protein in red blood cells. The more glucose you have circulating in your blood, the higher this level is. Once glucose attaches to the red blood cell, it remains for the life of the cell, which is about 3 months. Therefore, measuring it gives you an average blood glucose over the past 3 months. This measure is referred to as HbA1C or simply A1C. The finding is expressed as a percent and below 6 percent is considered a normal A1C level. This test 11

14 should be done every 3 months. Ketones, as you have learned, are a signal of potential problems, and you can also test for these at home with a strip or dipstick that registers whether there are ketones present in your urine. Test kits give detailed instructions on how to interpret the color on the strip. You should always check your urine ketones if your blood glucose is over 300 and if you are sick, particularly when you have a fever, nausea, vomiting, or diarrhea. Even if the blood sugar is low or normal check urine ketones during any illness. The presence of ketones is usually an indication of dehydration. If you have moderate or large ketones in your urine, call your health care provider right away. With experience you will learn how to treat illnesses yourself. The honeymoon period Many people with type 1 diabetes leave the hospital and find out that they need to take only very small amounts of insulin in order to keep their blood glucose close to the normal range. Patients may think they have been "cured." Unfortunately, we have to remind them that there is no cure for type 1 diabetes. They are experiencing what we call the "honeymoon" period, a sort of grace period that often occurs a few weeks after the diagnosis of diabetes. What happens is that the pancreas has a little bit of a rebound once treatment begins and the very high blood glucose levels begin to be normalized. The pancreas is still able to produce some insulin. The honeymoon period can last from a few weeks and in some cases a year or longer. But eventually the pancreas will completely stop making insulin. The honeymoon period emphasizes the need for continued close monitoring. There are two reasons it s important not to let yourself forget that you have diabetes or stop paying attention to it. First, this period is temporary and there is no way to predict exactly 12

15 when it will end. Close monitoring will show you when you start to need more insulin. Second, even taking just small doses of insulin, as you will do through the honeymoon, there is a risk of low blood sugar. Careful monitoring will help you prevent lows from happening. Insulin When you figure out how to provide your body with the insulin it needs, the general rule is to think like a pancreas. Easier said than done, you might respond, and that is certainly true. With all the advances of modern medicine and technology, scientists have not been able to come up with an artificial pancreas that performs the duties of a person s own healthy pancreas. But there are a variety of insulins with different actions, and when you put the possibilities they offer together with the brain power you and your parents and health care providers can apply, you might be surprised how close you can get to thinking and behaving like a pancreas. Insulin to treat people with diabetes once came from animal pancreases, but most in use today is synthetic human insulin, manufactured from the human insulin gene with recombinant DNA technology. The different types might seem a bit confusing, but they are classified into a couple of different categories, according to the timing of their action. This means three things: 1) how long it takes the insulin to work, or the onset; 2) when the insulin is most effective, or its peak; and 3) how long it lasts, or the duration. Shorter acting insulins like Regular, Humalog, and NovoLog start to work quicker, peak sooner, and get used up faster than longer acting insulins such as NPH, Ultralente, and Lantus. Different types can be mixed together in one syringe, 13

16 so that one injection can cover short- and intermediate-range insulin needs. (The exception to this is Lantus, which should never be mixed with any other insulin). Lantus always needs to be given in a separate syringe. Your doctor and nurse educator will work with you to determine what types of insulin you will use and your starting doses. While we can give you ranges of expected activity, insulin works differently in different people. It will take a period of trial-and-error to get your specific regimen and doses worked out. The following chart shows the types of insulin commonly used in this country, and their timing. Insulin Begins Working Peaks At Duration Humalog 15 minutes min 3-4 hours NovoLog 15 minutes min 3-4 hours Regular minutes min 4-6 hours NPH 2-4 hours 6-10 hours hours Lente 3-4 hours 6-12 hours hours Ultralente 4-6 hours hours hours Lantus 2-3 hours almost no peak up to 24 hours Generally, children and teenagers with diabetes take three, four or more shots of insulin a day. Your diabetes team will work with you to come up with the regimen that works best for you. Your first thought might be that you d like to have as few injections as possible but you will see that more frequent injections give you more flexibility in what and when you eat. The newest short-acting insulins (Humalog and NovoLog ) can be injected just before you eat. This means you don t have to plan ahead exactly how much you will want to eat to cover the insulin without experiencing a low. One increasingly popular regimen is a shot of Lantus, which is called "background" insulin because it provides steady low levels of insulin for most of the day, combined with pre-meal injections of Humalog or NovoLog to cover each meal. 14

17 Some people choose to have the same doses of insulin every day, and eat basically the same meals. Some of our patients find that it is easier to get started in this way, and then become more flexible as you get more familiar with the process of balancing food and insulin. Others are comfortable with changing each dose of insulin to match the food. We ll explain more about how this is done in the next section on managing your food. The important thing to remember is that once you take a dose of insulin, you need to eat a certain amount of carbohydrates to prevent a low blood sugar. About injecting Different sized syringes hold different amounts of insulin, and the size you use will depend on what your doses are. Just about all insulin used today in the U.S. is called U-100, which means that there are 100 units of insulin in 1 cubic centimeter (cc). Syringes range in size from 3/10 cc to 1 cc, holding 30 to 100 units. Some people like to use an insulin "pen" for their injections. You can carry this in your pocket or purse and give yourself injections without drawing the insulin from its container to the syringe. It is a convenient way to carry insulin, for example, to school or on short trips. Another alternative is to mix and draw up your insulin before a trip and store it in a traveling toothbrush holder. There are also a variety of needle sizes on syringes and pens ranging from 3/16 to 1/2 inch. Ask your diabetes educator which size is best for you. Your nurse will explain to you how to draw up insulin and inject it, and how to store opened vials. These tasks all require attention to detail just a little too much insulin can cause a 15

18 low. Insulin is injected "subcutaneously," which means under the tissue of the skin. You can inject yourself in your abdomen, arms, legs, or buttocks. Often people find they like some sites better than others, but it s important to rotate. If you give all your injections in the same place, the skin can become hard and lumpy. (Usually when this happens, just moving the injections somewhere else will clear up the problem.) Determining dose the thinking part How much insulin you take depends on several things: your size, your blood glucose reading, what and how much you eat, and the amount of exercise you get. In children and adolescents, these variables are further complicated by one more the fact that you are growing, making every calculation a little bit of a moving target. It can be frustrating. What s good on Monday might not be good on Tuesday. Other factors such as stress and illness also can have an influence. But with experience you will be able to anticipate how the variables interact with each other, at least most of the time. In the beginning, you will consult closely with your health care providers about making dose adjustments. But it won t be long before most people get an intuitive feel for changes that need to be made. Usually you won t make a change in response to a single blood glucose reading, and when you do make a change, it s usually a good idea to wait a couple of days to see how the new dose is working before you start tinkering again. It may take a few months until you feel comfortable making dose adjustments. A good way to get started is to ask your doctor or nurse educator if they agree with dose changes you would like to make. 16

19 Pumping An insulin pump is a beeper-sized device attached to an infusion kit, a needle or soft cannula (tube) that delivers the insulin under the skin. People usually wear pumps on their belts or waistbands or in a pocket. The pump is powered by tiny batteries and provides a steady infusion of very small amounts of insulin 24 hours a day, plus larger doses called boluses at mealtimes. The pump doesn t decide the dose you do, and programs the amount you want into the pump. Many of our patients tell us that using an insulin pump gives them more freedom and flexibility in their lives and better control of their diabetes. But successful pumping requires motivation and willingness Insulin Pumps to be responsible. It is not a cure for diabetes, and it won t free you from the many tasks involved in managing diabetes. In fact, it means more daily blood glucose monitoring, closer attention to food content and portions, and a regimen of continuous calculating and decision making. Fast-acting insulins such as Humalog and NovoLog are almost always used in pumps. Their quick action and short duration, coupled with the pump s ability to continuously infuse insulin, closely mimics the action of naturally occurring insulin. Pumps were originally used by adults, but children now use them, and at increasingly young ages. With close parental involvement, children do very well with pumps some as young as infants or toddlers now pump insulin. 17

20 What to eat and when If there is one thing that most people think they know about diabetes, it s that those who have it are not supposed to eat sugar. Well, guess what that s not true. Sugar should only be a small part of anyone s healthy diet, but children and teenagers and adults with type 1 diabetes can eat some sugar now and then without doing any harm. You don t have to think that you ll never again eat a piece of birthday cake or a candy bar. Sugar is just another carbohydrate, and even though it is a carbohydrate without much nutritional value, it is not forbidden. In fact, nothing is forbidden. The American Diabetes Association recommends an individualized approach to eating, without restrictions on calories unless obesity is a problem. Children and teens with diabetes should follow the same principles of healthy eating that apply to people who don t have diabetes, with adequate calories and nutrition for normal growth. This can be complicated for anyone there has been considerable debate lately about what constitutes a healthy diet. But certain principles are well accepted. Meals should be low in saturated fat and high in fiber, with plenty of fresh vegetables and fruits. The main difference between the way you and someone without diabetes eats is that you can t be as spontaneous and casual about eating as you once were. You have to think about every bite you take, every drink you swallow, except in the case of a few "free" foods and drinks (for example, diet sodas or sugar-free Popsicles). But most of what you consume needs to be covered with insulin, and you and your parents will figure out how much insulin you need and when to take it. It is important to correlate the timing of eating with the peak action of your insulin. That is why people with diabetes are usually advised to eat their meals and snacks at scheduled times. People who use insulin pumps have a bit more flexibility to eat small amounts whenever they feel like it, because they 18

21 can infuse small doses of insulin to cover what they eat. A dietitian is part of your diabetes treatment team, and you will work together to come up with meal and snack plans that include your favorite foods and satisfy your hunger. As we explained in the insulin section, modern fast-acting insulin makes it easier to be flexible with what you eat. But many young people, especially when first diagnosed, find it less complicated to keep insulin and food fairly consistent, eating approximately the same things at the same times every day. This doesn t mean you have to eat exactly the same thing every day. Exchange lists group foods according to categories and makes it easy to substitute foods with similar nutritional values for each other. Nutritional values are the components foods are broken into during digestion carbohydrates, protein, and fat as well as total calories. Using exchange lists can give you variety, even on a relatively fixed meal plan. All packaged foods sold in this country are required to provide nutritional information on the label that tells you how much carbohydrate, protein, fat, and total calories are in each specified portion. Carbohydrates are the most important thing to keep track of in calculating nutritional values, because carbohydrates are converted to most of the glucose that needs insulin to take it into cells. (Protein is also broken down and converted to glucose, but very slowly.) Carbohydrates are found in a variety of different foods: bread, cereals, grains, pasta, rice, fruit, milk, corn, potatoes, and some other vegetables. Sugar is a simple carbohydrate, and the starchy foods listed are complex carbohydrates. 19

22 The amount of insulin you need is directly related to how much carbohydrate you consume. Carbohydrates are measured in grams, and 15 grams is considered 1 portion, or 1 exchange. In balancing insulin and carbohydrates, a starting point is to match 1 unit of insulin to a certain amount of carbohydrates, but this is variable from person to person. Your blood glucose monitoring will tell how much insulin you need for the grams of carbohydrates. It will take some trial and error to figure out your own personal insulin sensitivity. It may range from 1 unit of insulin for every 5 to 60 grams of carbohydrates. You may have lost some weight recently and find that you are really hungry all the time. Once you start taking insulin you will start to regain some of your weight and when you catch up to your lost weight you will not be as hungry. Be sure to discuss any needed changes with your dietitian. Physical activity A regular exercise program and plenty of physical activity is important for anyone s good health, not just people with diabetes. A regular exercise routine can also be one of the things that helps you keep good control of diabetes. Exercise can burn extra glucose, keep your muscles (including your heart) strong and flexible, lower blood pressure and heart rate, and increase your sensitivity to insulin. And, as 20

23 everyone who exercises regularly knows, it just makes you feel better in general, in your body and your mind. We recommend that our patients get involved in whatever sports or physical activities they like baseball, soccer, swimming, running, bicycling, tennis, dancing or whatever appeals to you. If you don t like competitive team sports, brisk walking every day is a healthful alternative. In the case of exercise and, as we have emphasized, for most things in your life diabetes doesn t prevent you from doing anything. We know of athletes with type 1 diabetes who play at the top levels of professional baseball, football, tennis, hockey, and soccer. Like food, exercise must be balanced against insulin needs, but in this case the balance tips in the opposite direction. Exercise usually decreases your need for insulin. The main risk of exercise is hypoglycemia, or low blood glucose. Exercise can cause glucose levels to drop during the exercise, immediately after it, or more long-range over a period of several hours after the exercise. You can prevent low blood glucose by doing a couple of different things. First, monitor. Know what your BG is before you start and when you finish any fairly strenuous physical activity, and stop after every half-hour or so of aerobic activity and check it again. Second, cover the exercise with food. Always have food with you to prevent low blood sugar. Many people find that snacks like juice boxes are good sources of quick-acting carbohydrates. Because of the delayed effects of exercise on BG, and the action of long acting insulins like NPH if you exercise in the evening, this means you will have to be sure to eat something with carbohydrates before you go to bed, to prevent an overnight low. Another way to prevent lows is to lower insulin doses before and possibly after exercise. This is something your health care professional can consult with you about, and it will involve the usual trial and error until you come up with the formula that works best to keep your blood glucose in the tar- 21

24 get range. Avoid physical activity when there are ketones in the urine. When this is the case, exercise can raise the blood glucose even higher, because exercise releases other hormones ("stress" hormones), which raise BG levels. This can lead to ketoacidosis, a serious condition that requires immediate medical attention. Sometimes people who use insulin pumps are concerned that strenuous physical activity and especially contact sports (for example, football or basketball) will damage the pump or knock out the infusion set. Some people put the pump in a protective pouch in these circumstances, or else they take it off. Usually there is no problem with taking off the pump for about one hour. The activity itself will probably lower BG as much as the small amount of insulin that would be infused. Again, the important thing to remember is to monitor before you take off the pump, while you re playing, after you re done and quickly respond to a low with carbohydrate-containing food or drink. We ve talked a bit about lows already let s take a closer look about what this means, how to prevent it, and how to treat it when it happens. Short Term Complications 1. Hypoglycemia Hypoglycemia, the most common acute complication of type 1 diabetes, is the condition that occurs when your blood glucose goes too low. We refer to these episodes as "lows" and they are also called "insulin reactions." This is other end of the diabetes balancing act. Lows are caused by taking too much insulin, or not eating enough food to cover the insulin you have taken. In other words, in a person with type 1 diabetes, low blood glucose is caused by the treatment, not the disease 22

25 itself. Lows can happen if you skip a meal, if you exercise too much without eating, if you wait too long to eat a meal after taking insulin. Sometimes people experience lows because they made a mistake drawing up their insulin and injected too much. Sometimes lows happen even when you are very careful. As hard as we try, giving insulin by injection will never work exactly the way the pancreas works to deliver insulin. When blood glucose goes below about 60 mg/dl, there is not enough glucose in the bloodstream for the brain to function properly. Below 40, a person has trouble reasoning or using good judgment. Below 20, the brain can barely work at all, and someone with a BG this low may lose consciousness. Low blood glucose is a signal for immediate medical attention, with a simple carbohydrate-containing food or drink that can quickly bring the BG back up to a healthy level. Sometimes a quick drop in blood glucose will bring on the symptoms of a low, even though the level remains well above 60. The way to know for sure is to test. It s a good idea to always have your meter with you, in a backpack, purse or sports bag. Symptoms of hypoglycemia can be physical, mental or emotional. They vary from person to person and according to how low your glucose goes. If you start experiencing the symptoms of a low while you are exercising or engaged in any physical activity, you should stop, test, and treat as necessary. The following lists include the more common symptoms our patients describe, and some, but not all, will be familiar to people who experience lows: Shakiness or trembling Sweating Dizziness or light-headed feeling Double vision Racing pulse 23

26 Heart palpitations Extreme hunger Stomach ache Sleepiness Stumbling Unconsciousness or seizures (in severe cases) Confusion or disoriented feeling Trouble concentrating Grouchiness Crying for no reason Behavior changes Nightmares We divide hypoglycemia into three categories, according to how serious it is and what the response should be. In the case of mild hypoglycemia, you are aware of what is happening to you, you can tell someone, and you can eat or drink something with sugar in it to bring your BG up. It is always a good idea to eat something with a quick acting sugar (for example, glucose gel or tablets, fruit juice, regular soda, or cake icing) and longer acting carbohydrates (for example, a sandwich, crackers, or cereal). Usually about 15 grams of fast-acting carbohydrate is enough to bring up a mild to moderate low, and it may take from 5 to 15 minutes before you feel better. It is important not to overtreat a low blood sugar as this may result in the blood sugar going very high. We call the low blood sugar moderate hypoglycemia when you don t know that you re low, which can be a potentially dangerous situation. This is most likely to happen in younger children. Someone else has to become aware of the low, and give you food or drink to treat it. In the case of severe hypoglycemia, the person cannot swallow because he or she is unconscious or having a seizure or is otherwise too ill. Another person must handle the treatment, and it can t be done by mouth. This is usually the time 24

27 for glucagon. Glucagon is another hormone, one that puts glucose into the bloodstream (sort of the opposite of insulin). We recommend that all of our patients have a glucagon emergency kit as part of their diabetes supplies. Hopefully you ll never have to use it, but it s a good idea for you and your parents to read the instructions that come with the glucagon kit and know how to use it. Like insulin, it must be injected, but it works faster if injected in a muscle rather than under the skin like insulin. Glucagon may cause vomiting, so the person getting it should be on his or her side to avoid choking. You should eat as soon as you are able after a glucagon injection, since it is a short-acting treatment. Emergency Kit In babies and toddlers, who cannot tell someone of their symptoms, a danger of hypoglycemia is that it will go undetected until it is very serious. To prevent lows, we usually have higher targets for the BG range of very young children. Night time lows should be suspected if a young child cries out in the middle of the night or if a child wakes up with a headache, sweating or a nightmare. If someone doesn t respond to a glucagon injection, or there is any question at all about treatment starting to work, call 911 for emergency medical assistance. Monitor your blood glucose frequently as you are coming back from a low, to make sure that you treated it sufficiently and that you didn t eat too much and cause your BG to go too high. If you have frequent lows, you should consult with your diabetes treatment team about adjustments that need to be made in food, insulin, or exercise, to prevent the lows. You should notify your health care team if you ever have to use Glucagon as a decrease in insulin is almost always needed. Keep an extra Glucagon Kit at school. 25

28 2. Ketoacidosis A single high blood glucose is not an emergency, but if BGs stay very high over a few days, you can get very sick. The symptoms of hyperglycemia are the same as diabetes itself frequent urination and extreme thirst. Even though you drink a lot, you can still dehydrate quickly. Large ketones appear in the urine because the body is breaking down fat for energy. Increasing ketones cause an acidic build-up and the condition of diabetic ketoacidosis. As we noted above, many people have DKA when they are diagnosed with diabetes. In people who have had diabetes for a while, DKA is usually caused by inadequate doses of insulin. We also see it when people have illnesses that involve vomiting. They may think they don t need any insulin if they are not keeping any food down, but they still need some. In fact, stress hormones are released when you are ill, and they work against insulin and raise blood glucose. Good care and careful monitoring usually can prevent DKA. Always check urine ketones if blood sugars are above 300 and during any illness. DKA is a medical emergency, and if you suspect it, you should go to a hospital emergency room. It should be treated by experienced specialists. Long Term Complications Other complications sometimes develop over a longer period of time in people with diabetes. Complications can occur in the eyes, the kidneys, certain nerves, and the cardiovascular system. We are not quite sure what causes the damage to these organs and systems, but it is probably related to chemical changes that are caused in the body by long-term build-up of glucose. We don t tell you about these potential problems to frighten you. In fact, these long-term complications are rarely 26

29 seen in children or teenagers. Usually they occur in people who have had diabetes for a long time and have not had very good blood glucose control. As we have emphasized throughout this booklet, good control reduces the risk of long term complications. And it is also important for people with diabetes to avoid other risk behaviors that contribute to development of these conditions, such as smoking or unhealthy eating habits. School and diabetes Many children and teens soon feel very comfortable taking care of diabetes at home, but the idea of taking it outside of their homes is more difficult. Specifically, they may not want to give insulin shots or take BG readings or do other diabetes tasks at school. You know by now that you can t close the door on diabetes and leave it behind when you go to school or anywhere else. It comes with you, of course, and you don t have to leave the good control behind either. Remember, there is no reason to be ashamed or embarrassed in front of other children because you have diabetes. You didn t get this disease because of anything you did or didn t do. It is important that the teachers, principal, school nurse, and any other people you have contact with at the school (for example, gym teachers, bus drivers, cafeteria workers) know that you have diabetes, and know a little something about problems you might have because of it and how to deal with them. It is up to your parents to let school personnel know you have diabetes, and whatever specifics of your treatment they need to know. We recommend a conference with parents, teachers, principal, coaches, and school nurse as soon as possible 27

30 after your diagnosis. There are many educational materials available to teach school personnel about diabetes. We provide a letter with a brief explanation of diabetes, if you want to start with that. If insulin injections are to be given during the school day, there must be specific guidelines on file with the school nurse about dosage. Injections and monitoring are usually done in the nurse s office. Many schools allow monitoring in the classroom. But children and teens with diabetes should never be sent to the nurse s office alone when a child is feeling low and might become confused in finding the way. The most common problem that comes up for children with diabetes in school is hypoglycemia. It is important that not just your teachers, but also your friends, know how to recognize the signs of a low and how to treat it. You should always have a kit of "survival" supplies nearby. This kit, which can be kept in a small plastic sandwich bag, can contain glucose tablets, a box of fruit juice, a tube of cake icing, and peanut butter crackers. Your name, specific instructions, and emergency phone numbers should be included with the kit. School personnel should be advised that whenever a low is treated during school, parents should be told about it. We ve found that a child with diabetes can provide a good opportunity to educate other schoolchildren about the disease and what it means for someone to be living with it. Sometimes a parent can demonstrate to the whole class how injections are given and blood glucose is monitored. These types of educational efforts can go a long way to help a child be accepted and feel less different or isolated in school because of his or her disease. When you get sick Getting sick can present special challenges for someone with diabetes. Illnesses require attention to detail and under- 28

31 standing of the many different factors that can affect control. We advise parents to be in close contact with their health care provider from the earliest signs of illness and throughout the course of an illness. The illness must be treated, of course, along with continuous diabetes treatment. When you are sick, it is more important than ever to monitor frequently, both blood glucose and urine for ketones. There can be two somewhat contradictory things going on that can be difficult to sort out and keep up with. Children who are ill often don t feel like eating, or may have vomiting. This would usually indicate a need for reduction in insulin doses, because the usual food is not eaten to cover them. But at the same time, illness may trigger release of the stress hormones, which raise blood sugar, indicating a need for more insulin. Also, many medications contain sugar, although the amounts are relatively small. Some parents have questions about over the counter medications during an illness. You may still give medications that you used prior to diabetes such as acetaminophen. The only way to know how much insulin you need is to monitor. It is very important not to stop giving insulin during illness, but it is also important to not give too much, because the last thing you need is a low to deal with on top of everything else. Be sure to have food on hand to treat a low in a child who doesn t feel like eating for example, non-diet sodas, Popsicles, Jello, pudding, or fruit juice. Some illnesses, particularly when there is vomiting or diarrhea or fever, can cause rapid dehydration. It is important to drink plenty of fluids when you are sick. Sometimes it s easier to manage small sips rather than big gulps. Always have a 29