When the body does not produce insulin, type 1 diabetes (or insulin-dependent diabetes) develops. Although type 1 is most often diagnosed in children or young adults, the disease can strike at any age. With type 1 diabetes, there is an autoimmune disease action where the body attacks insulin-producing beta cells in the pancreas and destroys them. When the pancreas no longer makes insulin, blood glucose (blood sugar) cannot enter the cells to be used for energy, leaving high levels in the blood. People with type 1 diabetes must take exogenous insulin (from outside the body) to stay alive.
Diet, exercise and medications enable a person to maintain good blood glucose control and avoid complications. But first, you need to know your numbers by testing your blood sugar. Modern medicine has advanced the care of people with type 1 diabetes with various insulins and other medicines, devices to test blood glucose (glucose meters), insulin pumps, and continuous glucose monitoring systems.
What Causes Type 1 Diabetes?
It is suspected that some kind of infection or virus triggers the autoimmune response that attacks the beta cells of the pancreas. The anti-body GAD (glutamic acid decarboxylase) is found in 70-80 percent of type 1 diabetes patients. The environment may also be a factor. More cases of diabetes are diagnosed in the winter months, in northern climates, and in Caucasians. For instance, Canada has 60 percent more cases diagnosed per year than the U.S. Other factors that have been explored are childhood feeding practices, childhood viruses, and genetic susceptibility.
Type 1 diabetes is mostly diagnosed between the ages of 10 and 14, hence the previous classification as "juvenile diabetes." These patients no longer produce the essential hormone insulin, and type 1 is sometimes called "insulin-dependent" diabetes. Neither older name is accurate, since people can develop type 1 at any age and many people with type 2 diabetes also depend on external insulin shots. Five-10 percent of all diagnosed cases of diabetes are type 1, but type 1 accounts for almost all the cases in children under age 10. Seventy-five percent of all cases of type 1 diabetes are diagnosed in individual's under 18 years of age.
The Juvenile Diabetes Research Foundation (JDRF) offers these statistics:
- As many as three million Americans may have type 1 diabetes.
- Each year, more than 15,000 children and 15,000 adults - approximately 80 people per day - are diagnosed with type 1 diabetes in the U.S.
- Eighty-five percent of people living with type 1 diabetes are adults.
- The rate of type 1 diabetes incidence among children under the age of 14 is estimated to increase by three percent annually worldwide.
The Type 1 Diagnosis
Diagnosis day for type 1 diabetes is a dramatic event. This life-changing diagnosis is followed by a few days of hospitalization and a flurry of tests, finger pricks, insulin shots, and information to learn. Parents must quickly learn how to manage the child’s blood glucose all day and night, what to feed them and how to maneuver daily activities with blood glucose testing and insulin shots. If the patient is an adult, it is still important to have a support person, - friend, spouse or parent, - go through the learning process as a backup. Fortunately, modern day diabetes care includes an endocrinologist (medical expert in diabetes), nurses, dietitians, and certified diabetes educators to help the family through the technical and emotional challenges.
Normal fasting blood glucose levels are 70-99 mg/dl. Fasting means no food for 12 hours overnight. When a meal is consumed, food is digested and turned into glucose, so the blood sugar rises. In a non-diabetic, the peak occurs about two hours after the start of the meal and will reach a level of 140 mg/dl.
The newly diagnosed type 1 may have blood glucose levels over 300 mg/dl.
The diagnosis criteria is:
- Fasting blood glucose---equal or greater than 126 mg/dl (2 occasions)
- Two hours after eating---equal or greater than 200 mg/dl
- Random blood sugar---over 200 mg/dl with symptoms
- Hemoglobin A1C 6.5 percent or higher.
Understanding Normal Insulin Action
The treatment plan for type 1 diabetes is aimed to mimic the natural body process of fueling the body. Blood glucose control is complex and involves the brain, the digestive system, the liver and pancreas and all the intricate processes of the hormones and enzymes of these organs. Insulin is the key hormone that transports glucose from the blood into the cell to give the body energy. It is essential for life. If the body stops making insulin, then an outside source, insulin injections, must be started. Injected insulin is a protein molecule and would be made useless if swallowed like a pill.
Insulin is produced by the beta cells of the pancreas. Digestion starts with the first bite of food, turning some of the food namely the carbohydrates into glucose, and thus the blood glucose levels rise. Carbohydrates are digested most rapidly, then proteins and then fats. Insulin levels rise after eating, and after about four hours then insulin secretion is low.
Insulin is released in two phases; the first is a quick action that lasts 15 minutes. Then, a second slower phase lasts for 90 minutes or so, as the meal is eaten and digested then continues to raise the blood glucose. Insulin is also continually excreted in very small amounts around the clock.
Regardless of how much or little one eats; the regulation of blood glucose will be within 70-140 mg/dl because of the complex feedback processes. When one does not eat, the pancreas secretes another hormone called glucagon, produced by the alpha cells, that breaks down stored glucose (glycogen) and provides energy to the body, keeping the blood sugar from ever falling too low. The effect is a small rise in blood glucose.
Another hormone that is made and released along with insulin, called amylin, regulates glucose levels from the gut, or digestive system. Discovery of other body processes that regulate blood glucose will offer more diabetes treatment options in the future.
Type 1 Diabetes Treatment - The Basics of Insulin
Type 1 Treatment Basics
Without the internal production of insulin, digestion turns food into glucose (energy) but the glucose cannot be used for energy and so glucose builds up to high levels in the blood. The cells need the glucose but the key to unlock the energy is missing- insulin.
All persons with type 1 diabetes need intensive insulin therapy (three or more injections of insulin per day). Great advances have been made in insulin medications as well as the injection or delivery to the body. The newer insulins work similar to what the body used to make. The insulin is stored in syringes with needles, and even newer insulin pens are available. Today's needles are very thin and short, and nearly painless. Many people with type 1 diabetes use Insulin Pump Therapy (CSII-Continuous Subcutaneous Insulin Infusion) which eliminates the 3-5 shots a day to one insertion every three days.
If your child is diagnosed with type 1 diabetes, you will have a lot of questions and will want to learn as much as possible. Here are a few books that are helpful to understand type 1 diabetes:
- Understanding Diabetes 12th Edition, Peter Chase M.D.
- First Book for Understanding Diabetes (The Pink Panther Booklet)- by H. Peter Chase, M.D. 11th edition 2006. This booklet - and the above mentioned Understanding Diabetes -- is available through the Barbara Davis Center for Childhood Diabetes at the University of Colorado. It can be read online or purchased at the website. This booklet is a must have, and may be a part of the education you receive at the hospital.
- The Everything Parent's Guide to Children with Juvenile Diabetes: Reassuring Advice for Managing Symptoms and Raising a Happy, Healthy Child - Moira McCarthy, Jake Kushner, Adams Media: 2007
- Taking Diabetes to School (Special Kids in Schools Series), Kim Gosselin, JayJo Books: 2004
- Type 1 Diabetes for Dummies, Alan L. Rubin MD, For Dummies 2008.
Your health care provider will start you on an insulin regimen specifically designed for you. Sometimes only one daily injection is required of this long-acting insulin. This is a long acting insulin or basal insulin (glargine or detemer) and it is taken at the same time every day and delivers continuous "peakless" background insulin just like the pancreas used to do. Think of this insulin as "baseline" for basal dose, to cover all the time. This insulin will never make you go low or hypoglycemic.
Next, rapid-acting insulin is added, which mimics the first and second phase secretions of insulin when you eat food. This is also referred to as multi-daily injections or MDI. There are a number of rapid-acting insulins, with slightly different onsets, peaks and durations. Your health care provider will determine the best for you. Lispro, aspart, and glulisine are the current rapid acting insulins available on the market. You will need to test your blood glucose before each meal and then adjust your insulin dose (as directed by your physician) and give yourself an insulin shot just before you eat. This is called a bolus shot, which controls the rise of blood glucose from the food you are eating. Think "bowl" like a bowl of food. When you are taking rapid acting insulin with meals you need to make sure and eat carbohydrate foods or you run the risk of going low or experiencing hypoglycemia.
Just as we are all unique as individuals, there are a variety of insulins and schedules that can be created to best control your blood glucose for your unique lifestyle. You might work night shift, or care for the child with diabetes who is a picky eater, or you may be an athlete and have hours of training exercise a day. A child with Type 1 will need to have treatment plans adjusted for growth spurts. Parents and the child will learn how to adjust for sports, birthday parties and sick days. You need to work closely with a diabetes specialist to get the best treatment plan for you.
Review of Insulins
- Rapid Acting insulins- lispro, aspart, glulisine. Onset 10-20 minutes; peaks in 1-3 hours and duration 3-5 hours.
- Short Action insulins---Regular, R, Onset 30 min -1 hour; peaks 2.5-5 hours, and duration 3-5 hours.
- Intermediate Acting insulins---NPH, N-Onset 1-2 hours; peaks 4-8 hours and duration 10-20 hours
- Long-Acting insulins---detemir, glargine-Onset 1-2 hours; no peak; duration up to 24 hours.
An insulin regimen needs to be as flexible as possible, yet safe and effective. Some insulins can be combined and pre-mixed. Long-acting insulins must always be administered as a separate shot, however. Insulins also come in different strengths, but the standard used in the United States. is U100.
Delivering Insulin into the Body
You or your child will be instructed on the proper technique for insulin administration. There are several ways to take insulin, and you should be aware that there are options:
- Syringe: A syringe is a hollow plastic tube with a plunger and a needle at the other end. There are markers to measure the units of insulin. The syringe is inserted into a vial of insulin and the insulin is extracted to the proper dose. Good eyesight and finger dexterity is needed for this technique.
- Insulin pens: A newer and easier method to inject insulin, especially for people on the go, visually impaired and poor coordination. The pen has an insulin cartridge, and a small needle for injection.
- Insulin pump: The pump is a small computerized device that delivers insulin in two ways- a constant small amount of basal insulin and then a bolus of insulin at meals that the wearer determines. However, only rapid acting insulin is used in the pump. The pump is attached to the body all the times (except when showering and swimming) and is the size of a beeper or cell phone. The need for four or more shots a day is gone- the pump tubing is replaced every three days and a small plastic catheter inserted in the skin (with a needle) delivers the insulin. People who are comfortable with technology and want to be free of the daily shots and who need better glucose control find the pump a positive change. Starting on a pump is a decision the patient must be comfortable with, and must have demonstrated self-monitoring and assumed responsibility for good control. Small children benefit from the pump because very small doses of basal insulin can be given and there are less needle pricks. Most people who choose the pump achieve even better glycemic control. A certified diabetes educator can help the patient decide if he/she is ready for the pump, review the types of pumps, and identify which one would best serve his/her needs.
At first, a child’s injection is given by a parent or other adult. By age 14, the youth can give his/her own injections. The needle is inserted in a pinch of skin into the subcutaneous fat. Insulin will be adsorbed at different rates at different body sites—fastest in the abdomen, next in the arm, and more slowly in the thighs and buttocks. It is important to rotate the exact spot of injection each time; or fatty lumps or scar tissue might form over time and limit the effectiveness of the insulin injected. Your diabetes educator can help you with an injection site plan. When using basal and bolus insulin the sites need to be kept separate or the insulin may not work properly.
The amount of insulin will need to be adjusted throughout the day. The dose will be affected by:
- How much you exercise
- How much you eat (variability from meal to meal)
- If you are sick
- If you are traveling
- Changes in work schedule, weekday versus weekend, night shift, etc.
Type 1 Diabetes Treatment - The Basics of Blood Glucose Monitoring
Monitoring Blood Glucose
In order to know how much insulin to take, you need to know what the blood glucose level is. A finger prick and a glucometer will give you this immediate information. You can determine if your glucose level is going too high or too low. You can then make adjustments with more or less insulin, food or exercise.
The goal is to regulate the blood glucose as close to normal as possible. This is a chart of the goals at different times of the day.
Insulin Therapy Blood Glucose Goals
Ideal Glucose Level (mg/dl)
Acceptable Glucose Level (mg/dl)
One Hour After Meals
Two Hours After Meal
2 a.m.-3 a.m.
Tracking your blood glucose and keeping good records lets you know if you are on target, and if you should be making changes.
Meters to Monitor Blood Glucose
Before meters, patients and doctors really didn’t know what the actual blood glucose level was at any given time. Lab values were usually days old, and the urine testing gave marginal information. Now, there is a wide variety of meters on the market, that give instant (within seconds) and accurate readings of current blood glucose. Meters can be quite small (to tuck into pockets), with large numbers, and a memory with software that can be downloaded on a computer for analysis of patterns. The meter is usually free, and insurance pays for the testing strips. The inconvenience is that a tiny drop of blood must be drawn from the finger (or arm) with a lancet device. The test strip touches to blood droplet, is drawn into the meter and the results are displayed quickly. Testing must be done before each meal and in the evening, before each insulin dose. Parents usually check the child’s blood glucose in the middle of the night, or the older patient does this themselves.
How to Choose a Blood Glucose Meter
Since you will use this device repeatedly on a daily basis, you should select one that meets your preferences. It is not a forever decision—you can get a new one yearly, check with your insurance company.
Meter technology is constantly advancing; here are some things to keep in mind:
- Cost: Check with your insurance company about the cost of the test strips. Often the meter itself is free or inexpensive, but the cost of strips may inhibit your multiple testing routine if you run out at the end of the month. Ask about a second meter for backup—or to leave with the nurse at school or for the second parent to carry. Some insurance companies may dictate which meter they prefer.
- Blood Sample Size: The smaller the size, the less blood you must draw. This is important if you have calloused fingers and struggle with getting enough. A very small amount would be 0.3 microliter, and a large amount would be 3.0 microliter. This information is part the package description of the meter. However most of today’s meters use small sample sizes.
- Extreme Temperatures - Kids and Meters: Consider the environments you and your family enjoy. Do you spend time in very hot or cold environments? How well does the meter, as well as the strips, stand up to unforeseen changes in temperature. Ideally, the strips must be protected from extreme temperatures such as a hot car or a car left in the garage in freezing temperatures. Insulated bags for your diabetes gear are available.
- Size: You may want a portable meter that fits in small pockets and doesn’t take up much room in a purse or travel kit (other supplies are in there too!). The smaller the device, the smaller the screen size.
- Readability: Most of us would like bigger numbers to read; the bigger the better, particularly if you are a parent that wears glasses and may be searching in the middle of the night for your equipment. Backlighting is standard, but a great feature is a light at the test strip port so you can find it in the dark while trying not to wake a child in the middle of the night.
- Information Storage: Most meters have a memory chip and can be downloaded to your computer for charts and graphs showing your control. This can be particularly helpful to your physician or certified diabetes educator.
- Special Features: You may want a meter that speaks, or has special features for limited eyesight or hand function.
- Alternate Sites: Although the fingertip is the most accurate reading, you may want to use alternate sites. Some meters have an adapter that allows blood to be drawn from the arm or leg. However, there can be a 30-point difference between the fingers and the extremities. Use the finger when you are suspicious of a low blood sugar.
- Batteries: Does the meter use a standard battery or must you get a special kind? How long does a battery last? Be sure the meter is working properly at all times.
- Meter Coding: Check to see if your meter and strips need to be coded. There will be a control solution to calibrate the accuracy of the meter. Be sure to read the instructions, and call the 800 number if you need help. Once you open the control solution, it is good for three months. The meter will also have a lancet device. This spring loaded plastic tool will have different depths, and also different gauges of the width of the lancet. You will soon find the best size and tension to use to draw the needed amount of blood. Remember to draw the sample from the side pads of the fingers. Don’t use the tips; that will hurt!
Continuous Glucose Monitor
Technology is always forging ahead, and one of the newest inventions is the Continuous Glucose Monitor (CGM). Although not commonly used in the past, more insurance companies are covering the cost of this device. The CGM is worn around the clock, and reports blood glucose every five minutes. The data is displayed on the screen with a graph, and the trend of the readings, up or down, is easily read. Fingers must still be pricked once or twice daily to calibrate the CGM. Some people wear one for a week to analyze blood glucose patterns that are puzzling and to figure insulin dosing changes. Some “pumpers” (people on the insulin pump) wear one continuously.
Teamed up with an insulin pump, a person with diabetes has the latest in diabetes technology. The CGM is recommended for age 18 and over, but some younger people have benefited from the use. Research is moving toward an "artificial pancreas," which combines the CGM with a pump to regulate insulin with little human intervention.
Type 1 Diabetes Treatment - Diet and Carbohydrate Counting
Diet and Carbohydrate Counting
A balanced diet consisting of 45-55 percent of the calories from carbohydrates is recommended. Because heart disease is a complication of diabetes, a diet low in saturated fats and high in mono and polyunsaturated fats will reduce the risk of heart disease. The calories in your diet are determined by your weight, physical activity, and weight goals.
Carbohydrates, which are sugars, starches and fiber, cause the blood glucose to rise. Carbs are found in sweets, as well as dairy products, fruit, vegetables, starchy vegetables, grains and flours. For someone with type 1 diabetes, injected insulin must be matched to the amount of carbohydrates consumed. Counting the carbohydrates in foods is a critical part of good self-care.
Carbohydrates are not "bad" foods. Starches and sugars have a similar effect on blood glucose; they make the blood glucose increase. In about an hour, most carbohydrate foods are digested and converted to glucose and have entered the blood stream. The blood stream is the fuel line to the body; and insulin transports the blood glucose to cells to run the cellular engine. Protein and fat have little impact on the rise of blood glucose except to slow the digestive and absorption process when carbohydrates are present.
Traditionally, the American Diabetes Association developed the Exchange Lists. There are six food groups: Milk/Dairy, Vegetables, Fruit, Starches, Protein, and Fats. The foods are grouped together because their nutrition composition is very similar. The servings are defined so that the foods in each group can be exchanged to offer variety in the diet. The three groups which are mostly carbohydrates and provide 15 grams of carbohydrate in each serving are Dairy, Fruit and Starch. The non-starchy vegetables have 5 grams per serving. For meal planning purposes, this is a good system. The exchange system is very useful for controlling calories, and designing an overall healthy diet. This system is helpful with foods without labels- a medium apple has 15 grams of carbohydrate, as well as 3/4 cup of blueberries. However, with type 1 diabetes, it is not specific enough for treatment purposes.
There are a variety of tools that can assist you in determining the amount of carbohydrates in foods. Food labels, websites and reference books are a good start. Here are additional creative ideas to help you or your family:
- Create a deck of cards for learning to count carbohydrates with card games. Learn to create your own set of Carb Cards.
- Lenny the Lion, presented by Medtronic, Inc., is an online diabetes learning game and mobile phone/tablet application.
- You can purchase food count books that list the amount of nutrients in most grocery store foods. Select a booklet that is more than just carbohydrates, so you can also be aware of the calories, protein, fat, fiber, and sodium in the food you choose.
- DiabetesCare.net also offers a free Carb Planning Tool
- There are plenty of additional websites that catalog food carbohydrates and other nutrients
There are a number of smart phone apps available for daily tracking of food, carbs, and blood sugars. The blood glucose meter companies may offer their own links for downloading your meter info and adding your carbohydrate intake.
Understanding Food Labels
The Nutrition Facts labels on food items will define the serving size at the top. Be sure to notice how many servings are in the container and then consider how much you are going to eat. The information listed is for one serving of the food, and the amount is defined. You need to practice assessing servings by first measuring your food, so food measuring cups and spoons and a food scale are tools you will need in your kitchen.
Next, look at the Total Carbohydrates, listed in grams. Remember all sugars and carbohydrates will affect your blood sugar. The total carbs is the number you need to use to count carbohydrates. You can divide this number by 15 grams, to get the number of exchange list servings you would be eating. There are sub listings under carbohydrates-sugar, fiber and sugar alcohols, if present. These numbers may not total the number of carbohydrates-the remainder is the starch or other complex carbohydrates. Fiber is important for our health, and the more fiber in the food, the better. Most fiber is actually slowly digested, and therefore does not make your blood glucose rise, or may delay the increase blood glucose from the other carbohydrate in the food. The rule of thumb is: If the food contains more than 5 grams of fiber, subtract half the grams of fiber from the carbohydrate grams to get the adjusted total carbohydrate grams.
The same rule applies to sugar alcohols. Sugar alcohols are sweeteners added to ice creams, candies and baked goods. Sugar alcohols do not affect blood sugars but they still contain calories, so watch how much you are consuming. If a food contains more than 10 grams of sugar alcohol, then you can subtract half the amount from the total carbohydrate.
When selecting recipes from cookbooks, always look for the recipe that have nutrition analysis with the serving size, calories and carbohydrate content. Here are a few of recipe resources to investigate:
Carbohydrates in Your Meal
Once you are sure which foods in your meal have carbohydrates, and you know how much of the food you are about to eat, you can add up the grams of carbohydrates in a meal.
Sample Meal Carb Counting: Lunch
Grams of Carbs
Whole Wheat Bread
Starch (2 servings)
Tuna Salad w/Mayo
Protein and Fat
Low Fat Milk
12 -- Total Meal Carbs: 47g
Your diabetes educator or dietitian will develop a meal plan with a carbohydrate goal per meal and per snack, individualized for your treatment plan. Generally, children need 45-75 grams of carbohydrate per meal, and 15-30 grams per snack. Learn to measure portions of foods-as you and your child practice portion sizes in order to know the carbohydrate content.
Record keeping and recognizing patterns of blood glucose levels, as related to diet, exercise and insulin, will help you manage control and reveal problems that may need to be addressed.
Type 1 Diabetes - What to Expect
Soon after a diagnosis of type 1 diabetes and treatment begins, the disease seems to retreat. The amount of insulin needed to control blood sugars decreases, and the pancreas produces some insulin. This can last for a few weeks up to a year.
The log books show infrequent highs, and very little insulin is needed to keep blood glucose in control. The remaining beta cells seem to keep up insulin production in their last ditch effort to maintain glycemic control. At some point, all insulin production stops and the blood glucose management becomes tricky and unpredictable at times. The A1C climbs because of the erratic numbers, and the real face of type 1 diabetes emerges.
Growing Up with Type 1 Diabetes
Type 1 diabetes changes lives - not only for the patient, but the parents and all who take care of a child. The child with type 1 diabetes can lead a full and productive life, but there are emotional, social and psychological challenges along the way. If diagnosed as a child, the parents are responsible for all the care, but will need to foster independence in the young person as he/she grows and takes over their own diabetes management.
It is an emotional challenge for parents. You have a child with a lifelong disease, and their life depends on you. You will need to learn everything you can about type 1, and be the lead in all the work around managing diabetes. Blood glucose checks, insulin shots, food management, insurance dealings, school personnel, handling emergencies, and sports activities - all will have a high priority in your own life.
As soon as your child is able to master certain diabetes related self-management tasks physically and emotionally, let your child be involved in self-care. Develop positive self-esteem by encouraging their involvement. Eventually, mastery over your child’s diabetes management will fall in their hands.
Depending on the age of diagnosis, the child's emotional reactions range from feelings of fear, to anger, denial, frustration and hostility, to acceptance, and back around again as life changes. The following section offers what to expect at each age.
Setting Glycemic Goals as a Child Grows
Type 1 diabetes is challenging to manage as a child grows, with growth spurts, and varying physical activity, and appetite changes. Expect the glucose goals to be loosened or tightened as the child ages. Great care must be taken to avoid hypoglycemic episodes in children, and so the blood glucose goals may be higher at younger ages.
Here are sample blood glucose targets for children as they age:
Before Meal mg/dl
Hypoglycemia risk, unpredictable food intake.
Vulnerable to low blood glucose.
More self-awareness and slef-monitoring with less risk of low blood glucose.
(Source: American Diabetes Association. Standards of Medical Care in Diabetes-2011. Diabetes Care 2011;34 ( Suppl 1): S11-61.)
Infancy (up to 18 months)
Symptoms can be misread- the baby has more diaper changes because of excessive urination, and eats and drinks eagerly without gaining weight. When nausea and vomiting occur without stopping, medical attention is needed.
The infant, being totally under parental care, will need daily finger pricks and shots. Parents learn to take care of the baby during hospitalization, and will have support from home nurses once they go home. It is a scary time for the parents and, again, a life-changing event for all.
The treatment goal for blood glucose is higher for infants to support proper neurological growth. Blood glucose readings between 150-200 mg/dl are a good target.
Carbohydrate intake must be calculated from breast milk or formula, and baby's varying appetite makes insulin dosing difficult. Specialists work closely with the parents to manage the situation.
Toddlers (18 months to 3 years)
Toddlers are learning their separate identity, and can be more active in refusing shots and food. Discipline issues start in these years, as parents struggle with the necessary care issues that the child wants to escape. The invention of rapid acting insulin has improved the parent's ability to give insulin just before the child eats, and to correct lows easily with a sweet. With picky eaters in this age group, many practitioners recommend giving the rapid acting insulin when the child finishes eating. It is hard to make a toddler eat the full meal as planned when they don’t want to. Parents learn that a glucagon kit is an essential safety net. The child is 100 percent dependent on others for their diabetes care, but accepts it as a normal part of life.
Children (3-6 years)
At this age, a child is still at home, so he/she is still mostly under parental supervision, but may be even more challenging. A child may be able to tell parents when don’t feel well, which helps with predicting hypoglycemia. The child will start to be aware that other children don't have this special attention with needles and food. Allow the child to be involved with simple diabetes tasks, such as finding the meter for testing, wiping the finger with alcohol, or dipping the test strip for ketones.
By age six, the child can get involved in a diabetes support group, or even a diabetes camp. Finding others that have the same concerns and limitations can help the child develop healthy attitudes about their disease. The child still can't manage the disease, and is too young to be frightened about talk of complications.
Children (6-12 years)
Starting school is a whole new challenge for parents, especially when the child has type 1 diabetes. The school nurse is a critical part of the extended care. Parents and the child need to meet with the nurse, teachers and administration to know the care plan. A 504 Plan will be developed with the parents and school personnel for the educational concerns. A Diabetes Medical Management Plan (DMMP) will be put in place for the child that will have the insulin dose and schedule, the carb ratio, the correction dose and the adjustments for physical activity all delineated. Contact numbers need to be shared. Parents may want the nurse to call in the blood glucose and check the insulin dose with the parent until these routines become comfortable for all involved. The school nurse will keep the insulin and other supplies in her office. The teacher will need to send the child with a friend to the nurse (in case the child has a hypoglycemic event on the way) before lunch for testing and a shot. Kids call this their "Nurse Buddy."
Teachers need to be aware of the special needs of the child with type 1 diabetes, but not draw unnecessary attention. The student must eat snacks, take bathroom breaks, and leave the classroom for medication and blood glucose checks, so find ways to make this happen without much ado. Be an advocate for the child, not a barrier.
All people involved must be aware of the signs of hypoglycemia and how to treat it. Treats, glucose tablets, and a glucagon kit must be kept in secure places. Parents usually choose to send lunch and snacks, knowing what the child will eat. It is helpful if the child (or the teacher) can write down what the child actually ate for parental carbohydrate counting.
Children at this age can start doing even more on their own, testing their own blood glucose levels, reading labels and counting carbs. The child will need to continue to report the results to the adult giving the insulin.
Teens (13-15 years)
Officially a teenager, but still in a curious accepting phase, the teen wants to be more involved in self-care and is willing to learn more about diabetes. Just at a time when the parent is trying to give up control, the hormonal development will start making glycemic control more difficult. The doctor will agree that slightly higher blood glucoses during this stage are acceptable, particularly to avoid hypoglycemia just when the teen is venturing even further from parental oversight.
The young teen could be testing and giving insulin themselves by now, depending on how long since diagnosis and the teen's maturity. Parents may struggle with how much to remind them to do the self-care routine, since friends and activities are of high importance.
Teens (15-19 years)
Puberty, and all the changes that go with it, make this time probably the most difficult to manage type 1 diabetes. If the teen is newly diagnosed, their world is quite disrupted. This is a time when the friends are more important than parents, and the teen's social life is impacted. The teen may want to see their doctor on their own, and may not want to let others know about their disease. However, it is essential that the teen's friends understand the important aspects of managing diabetes.
At the time right before getting a driver's permit or going to college, the teen needs to demonstrate full responsibility for their diabetes care. The teen should feel comfortable talking to the doctor, and keeping appointments.
Girls are very body image conscious enough at this age, and weight may become an added issue. The teen girl figures out that skipping insulin shots aids in weight loss, but it will show up on the A1C readings and cause long term complications. Be aware of restrictive eating behaviors (beyond good healthy eating for diabetes), as this is prime time for the development of eating disorders. Deliberate withholding of insulin to lose weight may be a sign of "Diarexia" or vomiting to control weight and blood sugar is "Diabulemia". A mental health specialist (counselor) can help if you suspect your teen has an eating disorder.
This is the time to work toward tight glycemic control, for a lifetime free of complications. Good habits, now while still at home, will carry over to college and hopefully when the teen is on their own. Discussions about alcohol, sexual activity, risk of pregnancy and dangers to a fetus when glycemic control is poor, as well as sexually transmitted diseases, will have to occur in these years.
Young Adults (College)
The student entering college with type 1 diabetes has had some time to master their self-care. The college authorities need to be made aware of their diabetes, and special needs. If certain accommodations are necessary, they must be provided under the Disabilities Act. The floor advisor and the roommate need to be included in the support team, in case glucagon needs to be administered.
Getting supplies delivered, getting to medical appointments and the pharmacy, eating at certain times and certain foods, keeping snacks in the dorm, late nights studying, and varying class schedules can all be challenges. Add sports activities and social life, and diabetes management must be a high priority.
The young adult with type 1 diabetes will need to transfer to adult diabetes care. The National Diabetes Education Program has materials to help with this transition process.
Setting Up Care for Your Child With Type 1
- Keep insulin stored in the butter dish of the refrigerator for long term storage. Once opened, insulin can be at room temperature for a month. If everyone knows where the back-up bottle or pens are kept, they are easily found in a pinch. If insulin remains after it has been open for 30 days, then discard.
- Set up a "diabetes central" home. A drawer or cupboard, usually in the kitchen, where a blood glucose meter, insulin, test strips log blood, glucagon kit, phone numbers, appointment book and notes are kept. Have additional meters in the bedroom and in the travel pack.
- Travel pack- designate a bag to keep all the supplies in so that when you run out the door, you only have to add the insulin to the bag and nothing will be forgotten. Be sure snacks and glucose tablets and the glucagon kit is included.
- Keep a list of all the emergency and important phone numbers in this spot, along with instructions for emergency care.
- Contact your child's school (if school age) and begin the process of creating a 504 Plan, which is mandated by the Americans with Disabilities Act. Your school personnel will help you create a safe and non-discriminating environment at school.
Type 1 Diabetes Treatment - Hypoglycemia, Hyperglycemia, Ketones, and Diabetic Ketoacidosis
Hypoglycemia (Low Blood Sugar)
Having type 1 diabetes and being on insulin puts you at risk for hypoglycemia, which is the result of low blood sugar (not enough blood glucose getting to the brain and your body)-a serious and potentially dangerous situation. The effect of taking insulin is to lower your blood glucose- and it may go too low if you, or your child, don't eat enough food, get extra exercise, or have a disruption in the treatment plan. You will not be functioning well, so driving and operating dangerous equipment is a great risk. A child may go too low and pass out, particularly in sleep. Most people recognize the symptoms and are awakened, but some people over time can have "hypoglycemia unawares" or are insensitive to the effects of hypoglycemia and do not have these physical warnings.
Signs and Symptoms of Hypoglycemia:
- Rapid heart beat
- Extreme hunger
- Mood changes
- Mouth numbness, difficulty talking
Causes of Hypoglycemia:
- Too much insulin
- Insulin at the wrong time
- Not eating enough food
- Skipping meals
- More exercise or physical activity
- Drinking alcohol
- If you feel "not right," test your blood sugar immediately!
What to Do: The Rule of 15
- Take your blood sugar. If your blood sugar is 70 mg/dl or less, and with symptoms, treat with 15 grams of simple carbohydrate.
- 15 Gram Emergency Foods:
- 4 oz. fruit juice
- 8 oz. skim milk
- 6-8 Lifesavers (chew)
- 1 small box of raisins (2 Tbsp.)
- 1 small serving of chewy candy such as gummy bears
- 1 small tube of cake decorating gel
- 4 oz. of regular soda
- 1 tube of glucose gel
- 3-4 glucose tabs (15 grams worth)
- Often times when someone with diabetes experiences a low it is seen as a license to eat candy. Do not use chocolate candy or peanut butter because the fat content will prevent the blood sugar from rising quickly, which is your goal at the moment.
- The glucose gels and tablets are fastest acting because they are absorbed in the mouth, while the other foods need to be digested by the stomach and liver.
- Wait 15 minutes and retest the blood glucose. If not up to 70 mg/dl, re-treat with a second dose of 15 grams emergency food.
- Repeat in small increments. When blood glucose is above 100 mg/dl, have a substantial snack or meal, such as a sandwich or cheese and crackers; make it a meal with protein.
- If after two treatments the low remains, call your physician, or if you feel faint, call 911.
Use of Glucagon Kit
Glucagon is a hormone that helps the liver release glucose and raise blood glucose levels. A special glucagon kit is available to treat severe low blood glucose in an emergency situation. It contains a vial of liquid, a powder (1mg. of the hormone) and a needle. Instructions are included.
When to use: When a child or adult is in seizure or unconscious with low blood sugar and cannot ingest carbs, the shot of glucagon can start raising the blood glucose. Place the child or adult on their side, because the glucagon shot can cause vomiting. Parents should have a plan of where to keep the kits- one at school, one at home, and one to send on activities. If the emergency occurs and the kit is not available, call 911. If you are using a glucagon pen, you need to call 911 regardless.
Remember to check the expiration date of the glucagon kit and replace before it expires!
Hyperglycemia (High Blood Sugar)
High blood sugar can happen on an hourly, or daily basis. Although undesirable, it is not an emergency most of the time. However, uncontrolled blood glucose can do damage to your body over time and cause serious long term complications.
Signs and Symptoms of High Blood Glucose:
- Frequent urination
- Vaginal yeast infections
- Blurred vision
- Tired, fatigued
- Dry itchy skin
- Numbness and tingling in the feet
Test your blood glucose more frequently. Be a detective and try to figure out why your numbers are running high. Did you eat more food, not exercise as usual, or miss doses of insulin?
Your blood glucose may run higher if you are getting sick or experiencing a lot of stress. You can lower occasional high blood glucose with more exercise, or reducing the carbohydrate in your next meal. When your blood sugars are consistently running high, you are at risk for dehydration, so drink beyond your thirst.
Testing for Ketones
With type 1 diabetes, it is important to test for ketones when blood glucose is continually running > 250. The ketones tests are done by urine or by blood sample. Test strips for urine ketone testing come in a vial. Dip the test strip in urine sample, wait, and match the color with the chart on the side of the bottle. This information is about two hours old, so act to correct the situation. The blood ketone meter is a more recent result, but the meters are not commonly available.
Do not exercise if your blood glucose is over 240 mg/dl and you test positive for ketones, and be sure to be drinking lots of water. Your diabetes educator may have taught you how to safely adjust your insulin dose to gradually get back in balance. If your blood sugar patterns are high for three days, call your doctor for treatment adjustments.
Diabetic ketoacidosis (DKA) is a serious condition that must be treated aggressively. DKA is insulin insufficiency. Often caused by the result of a stomach bug when a child or adult with type 1 diabetes cannot keep food and liquids down, and may not be taking insulin. The blood glucose gets very high, and the person becomes dehydrated as the kidneys try to flush out the extra glucose. The lack of insulin makes the glucose unavailable for the cells and so the body breaks down body fat as an alternative energy source. The ketones cause an acidic condition in the body that adds more stomach pain, nausea and vomiting. Hospital treatment is necessary to administer intravenous fluids with insulin and potassium. It is crucial to restore the acid-base balance of the body, and rehydrate to avoid serious complications.
Hemoglobin A1C - The Three Month Test
This test, commonly called "A1C," is an average of a person's blood glucose over a three month period. Red blood cells live for about three months, and glucose attaches to them as they collide in the blood stream. The test is stated as a percent, and a six percent A1C indicates the amount of glucose stuck onto the red blood cell. This test is used to diagnose diabetes, as well as manage it. An A1c over six-point-five percent indicates diabetes. The doctor will tract this every three months, and once it is under six-point-five percent consistently, he/she will monitor your diabetes with this test every six months. Keeping A1C under seven percent going forward will reduce the risk of complications of diabetes.
Type 1 Diabetes - Resources for Schools
Resources for Schools
- Helping the Student with Type 1 Diabetes Succeed - A Guide for School Personnel: National Diabetes Education Program
- School Advisory Toolkit: Juvenile Diabetes Research Foundation (JDRF)
- Safe at School: The American Diabetes Association school training modules as videos or PowerPoint program. What Key Personnel need to know.
- Helping Administer to the Needs of the Student with Diabetes at School (H.A.N.D.S.) is a training program for school nurses by the National School Nurses Association.
- Students with Diabetes: A Resource Guide for Wisconsin Schools and Families Developmentally, the child can recognize and treat hypoglycemia, can learn to test blood sugars, and make own food choices. Empower the child by keeping him involved in his diabetes management.
Type 1 Diabetes - Special Events
Exercise: Exercise lowers blood glucose. If your blood glucose is above 250 mg/dL, and you have type 1 diabetes, you need to check for ketones before exercising. If you have ketones, don't exercise. Immediately begin increasing your fluid intake as you work out to get your glucose levels under control.
Check your blood glucose while you exercise and after. You should not exercise if your blood glucose is under 100mg/dl. Eat some food and wait until you have higher glucose levels before an extended exercise, because it will drop during exercise.
Over the next 10-24 hours, your body will work to restore glucose into your muscles from your blood. You should see lower blood glucose levels for a while after you exercise.
- Athletes: There are a number of famous athletes and even Olympians with type 1 diabetes who work closely with their coaches and medical specialists to manage blood glucose during training and competitive events. The point is that there need not be limitations to personal goals because of type 1 diabetes.
- Food Events: Counting carbohydrates in restaurants, picnics, and at the ball park can be quite a challenge. At home, identifying carbohydrates, measuring servings, and reading food labels are all good practices needed for venturing into food events. Many restaurants now have nutrition information available on their websites, so the parents or the person with diabetes can plan what to order and accurately calculate the insulin dose based on the chosen foods. The website HealthyDiningFinder.com is a resource about the nutrition of restaurant meals.
- Sick Days: Getting sick can throw a wrench into your blood glucose control. You need to have a plan in place with your doctor about when to call, and what to do while you wait. If you have been vomiting or have diarrhea for six hours or more, or a fever in child, call the doctor's office. Check blood sugars more often and continue on medication routine. Also, check for ketones. Watch for signs of dehydration or ketoacidosis- trouble breathing, fruity smelling breathe, and chest discomfort. Be prepared to report blood glucose levels, insulin doses, fluid, and food intake and ketone levels when called by the doctor. If food is not tolerated, liquids with calories are necessary- regular popsicles, Gatorade or Pedialyte, frozen yogurt, fruit juice, or regular Jell-O. If the child has been vomiting and blood glucose is below 150, use liquids that have calories. Be aware of the onboard time of the last dose of insulin given. Your diabetes educator is a good resource for sick day preparation.
- Travel: Packing up supplies for even a trip to school or the store becomes second nature for the child with diabetes. Trips that involve airports, planes, and extended time away from home need special planning. Have a prescription for all your medicines and supplies from your doctor handy. Carry this with you as well as your medications, so the Transportation Security Administration (TSA) can examine it. TSA is prepared to handle insulin pumps and sensors, so indicating you have them will facilitate the inspection at airport security checkpoints. Have back-up medicine and supplies in case of damage or loss, including batteries.
- Alcohol: Drinking alcohol lowers blood glucose. Even one drink can send a young person to a hospital’s emergency room. Underage drinking is not only illegal; it can be lethal for the teen with type 1 diabetes.
- Celiac Disease and Type 1 Diabetes: Children with type 1 diabetes need to be screened for Celiac Disease. This is done with a blood test of tissue transglutaminase or anti-endomysial antibodies, with normal IgA. If normal, this testing should be repeated if there is failure to grow, diarrhea or abdominal pain. If positive, the child needs to be referred to a gastroenterologist for a diagnosis confirmed with an endoscopy and biopsies.
Celiac Disease is an autoimmune disorder in which the immune system reacts to the protein gluten, found in wheat, rye and barley, and causes inflammation and malabsorption of the villi of the small intestine. Nutritional deficiencies, such as anemia, vitamin B deficiency, and osteopenia, can occur if gluten remains in the diet. Some of the other related conditions are thyroid dysfunction, cancer and type 1 diabetes
Celiac Disease occurs in about one of every 100 people, and it occurs in one of every 10 people with type 1 diabetes. Standard practice is to test for Celiac Disease in people with type 1 diabetes. Celiac Disease can be silent, without symptoms, but still cause medical problems.
The dual diagnosis is a dietary challenge of controlling carbohydrate intake and not eating any gluten- wheat, rye, and barley. Gluten must be completely removed from the diet for the autoimmune response to subside and the villi to repair. When the digestive tract becomes healthy, absorption of calories and nutrients return to normal. The villi are in danger of damage if a morsel of gluten, more than 20 ppm, is consumed. Cross contamination with wheat, hidden additives in foods, restaurant recipes and gluten in cosmetics and medicines could cause a relapse. As the intestine heals, the absorption of calories and carbohydrates is changing, and can be a challenge to blood glucose control.
- Hypoglycemia Unawareness: Symptoms of a drop in blood glucose are typically light-headedness, shakiness, dizziness, and rapid heart rate. Some people with diabetes may not sense the physical warnings and are in danger of a serious drop in blood glucose causing dysfunction and blacking out.
- Driving: When a teen becomes of driving age, parents anxiety increases. A teen with diabetes must absolutely understand that low blood glucose while driving impairs reactions, and the driver is accountable for their own actions. The driver must check blood glucose before driving and again if on a long drive. They need to always be prepared to test and treat if necessary.
- Pregnancy: There is a risk of birth defects in a baby born to a mother with poor blood glucose control. Females with type 1 diabetes in the child-bearing years need to be very careful about birth control. High blood glucose in the first trimester (first three months) of pregnancy, at a time the female may not know she is pregnant, can cause severe birth defects or fetal death.
Type 1 Diabetes - Complications
The main goal of diabetes management is preventing long-term complications. If a complication occurs, it may still be possible to halt the progression of the complication and possibly reverse the complication. The primary prevention and treatment is improved blood glucose control.
Complications usually appear after puberty and later in life, and are caused by:
- Poor blood glucose control over time
- Poor blood pressure control
- Blood clotting issues
High blood glucose affects four major body parts:
- Eyes (retinopathy)
- Kidneys (nephropathy) 30 percent of type 1 diabetes develop kidney problems
- Nerves (neuropathy)
- Heart and blood vessels
Also affected are the joints (particularly the second joint of the little finger), the feet, risks to an unborn fetus, and sexual function in later years.
A number of large-scale studies have looked at diabetes management, best care practices, and long term outcomes. The Diabetes Control and Complications Trial (DCCT) results in 1993 revealed that in people ages 13-39, close to normal blood glucose levels had a decrease risk of problems with eye, kidney and nerves. In 2005, the same study reported that subjects with good blood glucose control had a 57 percent reduction in nonfatal heart attacks, strokes and coronary vascular disease. Although managing type 1 diabetes seems overwhelming, it is still possible to lead a full active life!
Type 1 Diabetes - Your Support Team
Your Support Team
Remember you are not alone. Together with your health care team you will be able to manage your diabetes. The insulin or medication regimen you start with is not the same one you will follow six months later or one year later. Changes will occur and are needed depending on how the diabetes is progressing. Members of the health care team include the following:
- Primary care physician or pediatrician
- Endocrinologist (doctor who specializes in diabetes care): Pediatric endocrinologists are available at Children's Hospitals
- Certified Diabetes Educators (nurse, dietitian or pharmacist specially)
- Registered Dietitian
- Other professionals: Podiatrist, eye doctor, social worker, mental health specialist
- Support groups: check with your local hospital for support group meetings
- Online support: websites, blogs, and social networking groups can offer you information as well as forums to connect with other people with type 1 diabetes, including the forums right here on DiabetesCare.net
Type 1 Diabetes - Additional Resources
- Juvenile Diabetes Research Foundation
- Type One Nation (online social network for people with type 1 and their families and friends)
- Children with Diabetes (online community for families with a child with type 1 diabetes)
- Diabetes Exercise and Sports Association (diabetes and physical activity information)
- Diabetes Camping Association (camps for children with diabetes)
- National Diabetes Education Program
The Top 10 Things to Know About Type 1 Diabetes
- Insulin must be taken for survival, but too much is dangerous. Test the blood glucose before each injection, as well as any time you suspect the blood glucose is too low. (See information on "Hypoglycemia" below). The effects of food and exercise on blood glucose needs to be understood. Know the signs and symptoms of low blood sugar.
- Carry glucose tablets and a glucagon pen at all times! Keep glucose tabs in end tables or nightstand drawers. Even when you are at home, if you experience a low, you may not be able to navigate the steps to get to the kitchen.
- You may want to have more than one glucose monitor - one at the bedside, and one in a child's backpack or in an adult's purse or carry bag.
- Keep track of supplies - medications, lancets, test strips - and order more before you run out. Using a medical supplier may be your best bet for getting home delivery of supplies and a good coverage at the same time.
- Keep a place in the house (best is the kitchen) where you keep all the supplies and log books, emergency numbers, and notes. Your carb counting information is handy here.
- In order to prevent Diabetic Ketoacidosis (DKA), check blood glucose frequently. Keep urine ketone strips on hand to detect the presence of ketones. If blood sugar shows you are spilling ketones, call your physician.
- As a good habit, keep back up insulin in the "butter" dish area of the refrigerator. When needed, everyone will know where it is kept. Also, even if you are on an insulin pump, you still need to keep an insulin pen or vial and syringe in case of pump failure.
- Medical alert bracelet - Be sure you or in the case of a child with diabetes, your child, are always wearing a medical alert bracelet. They’re easily purchased at online retailers.
- Know your Hemoglobin A1C. If your A1C is greater than 6.5 percent, have it checked every three months until it is within an appropriate target. If your A1C is less than 6.5 percent, have it checked every six months to make sure your diabetes stays in control.
- See your physician or Endocrinologist regularly and check in with your diabetes educator to make sure you are current with the diabetes standards of care.
An Introduction to Islet Cell Transplantation
DiabetesCare.net has been at the forefront of the exciting research being done within the field of islet cell transplantation. We have interviewed leading scientists working on the technology, leading surgeons performing the experimental transplant, and people who have undergone the procedure. While the procedure and related technologies are still in the experimental stages, islet cell transplantation could one day have far-reaching treatment implications for all people with insulin-dependent diabetes.