The Healing Handbook for Persons with Diabetes
Chapter 13: Diabetes and the Family
Part I: Pregnancy
Before You Become Pregnant
Part II: Advice for Parents of Children with Diabetes
Pitfalls for Parents
The Parent's Role
Part III: What School Personnel Should Know About the Student with Diabetes
This chapter addresses special concerns of families coping with diabetes. Part I focuses on the special needs of women with diabetes during pregnancy. Part II provides advice for parents of children with diabetes. Part III provides information for school personnel who have contact with students who have diabetes.
For women with insulin dependent diabetes, pregnancy requires special care and attention. You and your husband need to understand the effects of diabetes on pregnancy and the effects of pregnancy on diabetes. You will both need to know about insulin doses, diet, exercise, and how to recognize and treat hypoglycemia. Attaining excellent control of blood sugar levels prior to pregnancy and maintaining good control during pregnancy greatly increases your chance of delivering a healthy baby. If you still have questions about pregnancy after you read this section, see your diabetes nurse educator or your doctor, and get a copy of Diabetes and Pregnancy: What to Expect or Gestational Diabetes: What to Expect, from the American Diabetes Association 1970 Chain Bridge Road, McLean, VA 22109-0592.
As you plan your pregnancy, you and husband should both be aware that it will be more expensive for you than for women without diabetes. You will need special care during pregnancy and special precautions during delivery, and your child may require special attention at birth. Choose your medical team before you become pregnant. Your obstetrician, pediatrician, diabetologist, and diabetes educator will work together to provide you with the best care and advice. They will help you choose a hospital that has the latest monitoring and testing equipment and a high-risk nursery.
Statistics indicate that 5-7% of babies born to women with insulin dependent diabetes have abnormalities. The good news is that, with excellent blood sugar control prior to and during the first three months of pregnancy, the risk of abnormalities is reduced to that of women without diabetes: 2-3 % . Your level of control can be measured by blood glucose monitoring records and by a blood test called a glycosylated hemoglobin. This test provides information on your blood sugar control over the past 8-12 weeks. The result should be in the normal range before you become pregnant.
During the first trimester, hypoglycemia may be a problem, due to morning sickness or nausea that causes you to eat less. Hypoglycemia may also occur because your baby takes sugar from your blood to support its own rapid growth. During the second and third trimesters, your insulin requirements double and triple. Frequent blood glucose monitoring, insulin adjustments, exercise, proper rest, and a good meal plan will help you stay in good control.
Care during pregnancy
To maximize your chances of delivering a healthy, normal baby, follow these simple rules during pregnancy:
- See your doctor every 1 to 2 weeks.
- Stick to your prescribed diet and exercise program
- Check your blood glucose 4 to 8 times daily, and record the results.
Inject insulin as prescribed by your doctor. You may need 3 to 4 shots per day, and you may have to make frequent insulin adjustments.
Remember that hospitalization may be necessary during your pregnancy if your diabetes is out of control.
Hypoglycemia occurs more frequently during pregnancy, so you must always carry a fast-acting sugar and you must never skip meals or snacks. Ketosis may develop more rapidly during pregnancy when you are ill. Be sure to check your urine for ketones on sick days and any time your blood sugar is over 250 mg. Other, less common problems that may also affect women without diabetes include:
- Polyhydramnios or excessive amniotic fluid
- Toxemia, characterized by elevated blood pressure, protein in the urine, and swelling of the hands and feet
- Edema or generalized swelling
Women in poor diabetic control have a higher rate of miscarriages, but in healthy women with diabetes the risk is no higher than for women without diabetes.
As a direct result of elevated blood sugar, babies born to women with diabetes may be larger than average. If your blood sugar is very high, especially during the last trimester, your baby may be over 10 pounds. Your baby's growth will be measured several times during pregnancy by a technique using sound waves (sonography ).
For another test (the LS ratio), your doctor will insert a fine needle into your uterus and obtain a small amount of amniotic fluid. The LS ratio provides information about your baby's ability to breath on its own after birth. Standard classifications of diabetes have been developed to help predict the outcome of pregnancy. Based on your classification and test results, your doctor will decide on the best delivery date.
Most women with diabetes can deliver close to their due date in uncomplicated cases. To be safe, obstetricians usually deliver their patients slightly before the due date by inducing labor or by Cesarian section. Most babies born to women with diabetes are cared for in a high-risk or intensive-care nursery. This is done to ensure a close watch and quick treatment for any problems that may develop. Your baby may have low blood sugar and require extra glucose in feedings or by IV. Special care may also be required if your baby is premature.
After your baby is born, you will experience a tremendous decrease in your insulin requirements. If you have a planned induced delivery date, you will need only half of your pre-pregnancy insulin dose. This may last several weeks. Keep a careful record of your blood sugar levels; your medical team will need this information to determine appropriate insulin adjustments. If you decide to breast feed your baby, you will need less insulin, more calories, and lots of fluids. Hypoglycemia can occur rapidly in breast-feeding mothers, so keep sugar close by.
Gestational diabetes is diabetes that is diagnosed during pregnancy. It occurs more frequently in women who are overweight or have a family history of diabetes. After delivery, 98% of these women no longer have diabetes, but they are at greater risk of developing diabetes in the future. Treatment of gestational diabetes always begins with diet and exercise; insulin is introduced only if diet and exercise fail to keep blood sugars in a normal range. The goal is to normalize pre-meal blood sugars and keep after-meal blood sugars below 140 mg (120 mg at some clinics). If you are diagnosed with gestational diabetes, your obstetrician may expand your health-care team to include a diabetes educator, diabetologist, dietician, and neonatologist.
When you learned that your child has diabetes, you may have experienced disbelief, grief, and guilt. Maybe you asked, "Why did this happen to my child?" Maybe you cried out, "It's not fair! " You must come to grips with these feelings so that you can learn the tasks and techniques of diabetes control. Your whole family needs to make adjustments to your child's condition. How you deal with and accept diabetes affects the way your child deals with and accept diabetes. The more you know about diabetes, the better equipped you are to help your child. Read this section, and get a copy of Children With Diabetes by Linda Siminerios and Jean Betchart, available from your American Diabetes Association state or national affiliate, or from Diabetes Supplies, 8181 North Stadium Drive, Houston, Texas 77054.
As a parent, you are naturally anxious, but it's up to you to help your child accept his or her diabetes with a minimum of stress. The American Diabetes Association and the Juvenile Diabetes Foundation can be of great help. Other parents who have faced the same problem and learned to cope with it are more than willing to share ideas and advice. You must learn to protect without dominating, to supervise while encouraging self-care. Work with your child for the best control, but remember that "ideal" control isn't always possible.
Your child's self image and self esteem are threatened by diabetes. Be understanding and supportive. Try to avoid unnecessary anxiety about "cheating." You don't want to cause guilt feelings, or make your child think he or she is "bad." Children who think are bad may act accordingly. Help your child plan ahead. No child can should be expected to assume complete responsibility for diabetes control at too early an age. But, ultimately, responsibility for eating properly, injecting insulin, testing blood sugar, and planning exercise will be the child's. Maturity, independence, self control, and self esteem will grow as your child learns self-care.
A child with diabetes is a child first, and a person with diabetes second. Like all children, yours needs to grow physically, socially, and emotionally. Alert parents who are relaxed, knowledgeable, tolerant, and accepting help in the growing process. Feelings of guilt and resentment lead to problems between spouses and between parents and children. Your child's diabetes is a challenge your whole family must face together. It is not a punishment for anything any of you did.
An overanxious parent creates an overanxious child who is overdependent. By doing everything for your child, you deny him or her the self-control and self-confidence necessary for an independent life.
An overindulgent parent feels dietary restrictions and daily injections are too much for a child to handle. He or she offers special treats while providing little discipline. Children of overindulgent parents may grow up under the impression that they are incompetent -- incapable of coping with their own problems -- which reinforces feelings of inadequacy.
A perfectionist parent may achieve good diabetes management in early childhood through discipline, but there are risks. The child may feel guilty about poor blood sugar test results, and may even alter a result to obtain parental approval. During adolescence, children of perfectionist parents may rebel -- against both their parents and their diabetes care programs.
An indifferent parent may force his or her child to seek attention through rebellion, by "cheating" on the diet, or by skipping insulin injections. Children of indifferent parents may become depressed because of the lack of discipline, support, and supervision in their lives. They also have a higher frequency of hospitalization.
Your role as the parent of a child with diabetes will change as your child grows. Every child is different, of course, but there are some general guidelines you can follow at each stage. And there are some things you can keep in mind no matter what your child's age: Accept your child. Love, teach, guide, and discipline just as you would if diabetes were not a factor. Do not overprotect or overindulge. Accept your child's diabetes without guilt. Learning all you can about diabetes will help you overcome your fears and anxieties. And remember, you cannot control your child's diabetes by overcontrolling your child.
Years 0 through 7
During early childhood, the parent has full responsibility for all aspects of diabetes care. It's important to involve the child at an early age, however. Offer some choices, such as picking a spot to inject or selecting which finger to get the drop of blood from. Remember that parental approval is important at this age: be sure you describe blood test results as high, low, or normal, not good or bad.
Years 7 through 12
Although the parent continues to take major responsibility, during this period the child can take over blood glucose testing and insulin injections some of the time. By age 12, most children can manage their own injections, but parents must be vigilant and remind them if they forget. Children who are away at school or off playing with friends most of the day must assume partial responsibility for dietary control. Participation in self-care at an early age encourages the child to become independent and self-reliant
Try not to be rigid. Children need to learn that a reasonable compromise is all right for parties and special occasions. There is no reason for them to feel " different. " A serving of birthday cake and ice cream may elevate blood sugar, but the emotional value of participating with other children is also important. Cover extra food with a few units of regular insulin, if your doctor approves.
- Camps for Children with Diabetes in Massachusetts
Eliot P. Joslin Camp for Boys
Clara Barton Camp for Girls
North Oxford, MA 01537
Contact the Joslin Diabetes Foundation, 1 Joslin Place, Boston, MA 02215, (617) 732-2646
(508) 757-1211 (winter)
(508) 987-2056 (summer)
- Information on other camps may be obtained from the local chapters of the American Diabetes Association or the Juvenile Diabetes Foundation.
Years 12 through 17
At adolescence, your child will greatly resent dependence on you. Once you and your child are educated about diabetes, he or she must be permitted to participate in treatment decisions. Adolescents may act as if they did not have diabetes, ignoring their treatments (especially diet) and falsifying blood sugar tests. Or they may need to see for themselves just how awful they can feel before accepting the importance of control. Depression in adolescents with diabetes is not uncommon. They are aware of diabetic complications and death. They wish to be carefree and refuse to adhere to their regimen because they assume they will die young. Make sure your child understands the importance of good control -- significant improvements in diabetes treatment are likely during his or her lifetime (see Chapter 15)-- and make sure your child is aware of the many people with diabetes who lead full, rich lives. Don't hesitate to contact a professional counselor. Psychologists specializing in children with diabetes are available to help you.
Sports and Gym Class
Diabetes is no reason for missing out on sports or skipping gym class. In fact, exercise is an important factor in diabetes control. If your child has gym class before lunch, increase the morning snack of carbohydrate and protein. If your child participates in after school sports, increase the afternoon snack. Make sure your child understands that he or she must always carry fast acting sugar. It won't do any good in a gym locker. And make sure the coach and a few friends know how to help in case of a reaction.
Groups and camps for teens with diabetes can help by offering them a chance to share their troubles and concerns with peers. Teenagers need someone to talk with besides their parents. Let your teenager meet with his or her doctor or diabetes educator alone.
Teens and Parties
Your teenager can enjoy social occasions with friends as long as he or she remembers the following rules:
- Bring diet soda.
- Save some food exchanges from dinner.
- Choose foods carefully. Exchange hamburgers, pizza, tacos, subs, crackers, and popcorn for regular at-home meals.
- Replace calories for dancing. Test blood sugar, and estimate how long and how hard you will dance. Through trial and error you will learn how many calories you need to replace.
At the end of adolescence, around 19 to 20 years, your child will begin to mature in attitude and responsibility. Democratic guidance is the best approach as children progress from dependence to independence. Set realistic limits and goals, and use positive reinforcement. Praise is more helpful than punishments and threats.
Teachers, school nurses, and other school personnel need to understand your child's condition. Section 3 just ahead contains a concise overview of diabetes that will help school personnel cope with your child's special needs.
- Make a printout of Section 3 and bring these pages to your child's school nurse or teacher at the beginning of each school year. Your child's teacher will also benefit from specific information about your child's particular diabetes control requirements.
- Fill in a copy of the form following the information pages and give it to your child's teacher at the beginning of each school year.
- Be prepared to answer any other questions the teacher may have about your child's special needs.
- Use copies of the next form to communicate your child's daily blood glucose testing and dietary requirements.
- It's also a good idea to visit or call the school about once a month to see how things are going.
Like any parent, you deserve a night out once in a while. Don't let your fear of leaving your child with someone who does not understand diabetes keep you from enjoying life. For your own piece of mind, instruct your trusted baby sitter or relative in basics of diabetes care. Include the following:
- A brief overview of diabetes
- Blood glucose testing instructions
- Insulin injection instructions
- Appropriate snacks and meals
- Warning signs and treatment of low blood sugar
Keep supplies, equipment, snacks, and quick sugar food all together in a special location. Prepare a checklist that specifies what needs to be done at what time, and written instructions for emergency procedures.
Make sure the baby sitter knows how to reach you and your child's doctor at all times. Make printouts of the forms in the following section, or design your own.
TO THE BABY SITTER:
________________________ has diabetes.
Diabetes means that this child's pancreas does not make enough insulin. Without insulin, food cannot be used properly. A child with diabetes must take daily injections of insulin and must balance his or her food and exercise.
An insulin reaction may occur if the blood sugar gets too low -- especially before meals or after exercise.
WARNING SIGNS OF INSULIN REACTIONS
- Shaky, nervous
- Headache, nausea, stomach ache
- Changes of mood
Our child usually behaves as follows when having a reaction:
If this happens, immediately give the child sugar in the form of:
- Glucose Gel or Tablets or
- Sugar or honey, 2 teaspoons or
- Fruit juice, 1/2 to 2/3 Cup or
- Soft drink (NOT diet or sugar free), 1/2 to 2/3 Cup or
- Candy, 2-3 "Chuckles" or 10 jelly beans
You will find this supply of sugar in this location: _________________________________________________________________
Repeat the above feeding if the child does not improve in 10-15 minutes.
Follow with a milk and cookie or sandwich snack.
If the child does not improve after eating the snack, call the parents or physician.
Part III: What School Personnel Should Know About the Student with Diabetes
Prepared by the American Diabetes Association Committee on Diabetes in Youth
Endorsed by the National Education Association Department of School Nurses
We encourage you to print out these pages and bring them to your child's teacher every year.
All school personnel (teachers, nurses, principals, lunchroom workers, playground and hall supervisors, bus drivers, counselors, etc.) must be informed that a student has diabetes. It is imperative that all personnel understand the fundamentals of the disease and its care.
Diabetes is NOT an infectious disease. It results from failure of the pancreas to make a sufficient amount of insulin. Without insulin food cannot be used properly. Diabetes currently cannot be cured but it can be controlled. Treatment consists of daily injections of insulin and prescribed food plan. Children with diabetes can participate in all school activities and should not be considered different from other students. It is essential school personnel have conferences with parents early in each school year to obtain more specific information about the individual child and his/her specific needs. Communication and cooperation between parents and school personnel can help the diabetic child have a happy and well adjusted school experience.
Insulin reactions occur when the amount of sugar in the blood is too low. This is caused by an imbalance of insulin, too much exercise, or too little food. Under these circumstances the body sends out numerous warning signs. If these signs are recognized early, reactions may be promptly terminated by giving some form of sugar. If a reaction is not treated, unconsciousness and convulsions may result. The child may recognize some of the following warning signs of low blood sugar and should be encouraged to report them.
WARNING SIGNS OF AN INSULIN REACTION
- Excessive hunger
- Blurred vision
- Poor coordination
- Abdominal pain or nausea
- Inability to concentrate
- Inappropriate actions/responses
- Nervousness or trembling
- Drowsiness or fatigue
At the first sign of any of the above warning signs, give sugar immediately in one of the following forms:
- Glucose tablets or gel
- Fruit juice, ½ to 2/3 Cup
- Carbonated beverage (not diet or sugarless soda), 6 oz
- Candy, i.e., 2-3 "Chuckles", 10 jelly beans
- A sugar the parent has provided.
The student experiencing a reaction may need coaxing to eat. If improvement does not occur within 15-20 minutes, repeat the feeding. If the child does not improve after administration of the second feeding containing sugar, the parents or a physician should be called. When the child improves, he should be given a small feeding of l/2 sandwich and a glass of milk. He should then resume normal school activities and the parents advised of the incident.
Children with diabetes follow a prescribed diet and may select their foods from the school lunch menu or bring their own lunch. Lunchroom managers should be made aware of the child's dietary needs, which may include midmorning and midafternoon snacks to help avoid insulin reactions. Adequate time should be provided for finishing meals.
Blood sugar testing may need to be done during the school day. This information is needed to determine an appropriate diet/ insulin/exercise plan. It may also be helpful to get a blood sugar test if the child becomes ill during the day.
The child with diabetes should be carefully observed in class, particularly before lunch. It is best not to schedule physical education just before lunch; and if possible the child should not be assigned to a late lunch period. Many children require nourishment before strenuous exercise. Teachers and nurses should have sugar available at all times. The child with diabetes should also carry a sugar supply and be permitted to treat a reaction when it occurs.
Diabetic coma, a serious complication of the disease, results from uncontrolled diabetes. This does NOT come on suddenly and generally need not be a concern to school personnel.
Child's Name ___________________________________ Date ___________
Parent's Name __________________________________________________
Phone (home) _____________________ (work) _______________________
Alternate person to call in emergency _________________________________
Relationship _______________ Daytime Phone _____________
Physician's Name _______________________________________________
Signs and symptoms the child usually exhibits preceding insulin reaction:
Time of day reaction most likely to occur: ____________________________
Most effective treatment (sweets most readily accepted): ________________
Morning or afternoon snack: ___________________________________
Suggested "treats" for in-school parties: ___________________________
Note: A child with diabetes may need to check his/her blood sugar during the day to find out about his/her blood sugar level. The parents will show you the method they use and give you guidelines about when to notify them. Children usually are able to do their own blood glucose testing.
NOTES FOR TODAY
Child's Name ________________________________________________
Test blood sugar at:
__________________ __________________ __________________
And record below:
__________________ __________________ __________________
______________________________________ at ____________o'clock
______________________________________ at ____________o'clock
______________________________________ at ___________o'clock
Parents are at
_______________________________ Phone: ___________________
_______________________________ Phone: ___________________
REMEMBER: The care of diabetes is a team effort involving you, your physician, and the diabetes education staff where you receive your medical care. This handbook cannot-and was not meant to-replace this team effort.
This handbook embodies the approach of the diabetes care team at the University of Massachusetts Medical School. Different diabetes care teams may approach some aspects of diabetes care in ways that differ from those in this handbook. While most teams are in close agreement regarding the GENERAL PRINCIPLES of diabetes care, they may differ in the DETAILS. There can be more that one "right" way to approach a specific issue in diabetes management.
Always remain in touch with your diabetes care team, and bring any questions you may have about the materials in this handbook to their attention!
Copyright 1995-1999 Ruth E. Lundstrom, R.N. and Aldo A. Rossini, M.D. All rights reserved.
Feedback: send e-mail to Dr. Aldo Rossini.