When Your Baby Has Diabetes
You have recently learned that your baby has juvenile diabetes (also called insulin-dependent or Type I). After the initial shock, you may have felt an almost overwhelming sense of anxiety: Will I be able to care for my baby properly? Will I learn and remember all the new tasks which my baby's health and to manage his or her diabetes? Will life ever again be the same for me or my child?
Many of us, as parents and members of the Juvenile Diabetes Foundation (JDF) International, have had the same experience. We want to assure you, first of all, that the answer to each of these questions is a resounding "Yes!" What may seem now like a bewildering array of instructions and techniques will soon becomes second nature to you, and before too long your child will learn to take over much of his or her care. Right now, though, it's vital that you believe that diabetes will not prevent you or your child from living a full and active life.
There are many ways in which the members of your local JDF chapter can help you, from counseling to common-sense. Make use of your JDF neighbors! In the meantime, we've compiled some helpful advice for parents of diabetic infants which we've gained through their own experience, This brochure is not a comprehensive handbook for the care of a diabetic baby. Rather, it's intended to be a quick introduction and a handy reference source which we hope will be of service to you in the coming months.
The most important factor in caring for a baby with diabetes is to have a doctor whom you can trust; one to whom you can talk at any hour of the day or night,and who is willing to treat the entire child, not just the diabetes. And, if you do have two physicians, it's vital that the doctor treating your baby's diabetes be in close and steady contact with your physician.
No baby can offer an explanation as to why he or she is cranky or crying, and all parents spend a certain amount of time trying to guess the reasons. But you are a special parent and have to be a better guesser. Crying may signify nothing important or it may indicate a drop in blood sugar and the beginnings of an insulin reaction. What should you do?
Each diabetic person seems to have his or her own particular set of reaction symptoms, and in time you will come to know the tell-tell signs for your own child with a fair degree of accuracy. When in doubt, however, parents generally agree that it's better than uncertain. When the baby cries persistently for no apparent cause, give the child a little fruit juice, an extra snack, or some sugared substance. Of course, it's possible that you may be causing some sugar to be spilled in the urine (the state of hyperglycemia, or high blood sugar), but that's far less serious than allowing the onset of an insulin reaction (hypoglycemia, low blood sugar) to go untreated.
Blood Sugar Monitoring
Today it's possible to monitor levels of blood sugar yourself. (See JDF brochure Self Blood Gluclose Monitoring: Questions and Answers, and talk to your physician about it) Commercially available self blood glucose monitoring systems can eliminate your doubts about the cause of your baby's discomfort and can indicate specific action to be taken.
Your baby is probably on a relatively small dosage of insulin. The best syringes to use, in terms of easy-to-read dosage, are the low-dose disposable syringes that only measure up to 50 units(one unit per line). They are intended for use with U-100 insulin only.
Obviously, it's important to rotate the places in which the insulin is injected. But the problem with babies is that most of them don't have much fat on them. Their arms are tiny. Their thighs are small. And most often, the parents end up using the buttocks time after time. The need to change injection sites becomes even more urgent when you are only using a few areas. Make sure you alternate buttocks and rotate areas on the buttocks; give each spot a rest between injections. If the insulin is kept at room temperature, the injection will be less uncomfortable.
The need to give your baby an injection every day may seem to "hurt" you more than your child. But try to bear in mind that your attitude towards giving the injections is of paramount importance in the way your baby receives them. If you are fearful, hesitant, or shaky, your baby will receive two shots: one of insulin and the other of anxiety.
Perhaps the most helpful thing to remember is that giving the injection is necessary for your baby's life and that you are entirely competent to administer it. This will help you to be calm, direct, and firm.
It's also very important for both parents to take turns giving the injections, if at all possible. The baby should not depend on one parent exclusively. Keep in mind that in a few years, your child will be giving himself these shots as a normal part of each day's routine.
Despite all precautions, your baby may occasionally experience an insulin reaction. This occurs when the balance between glucose and insulin is upset and the blood sugar level drops rapidly. The symptoms are various: crankiness, sweating, rapid pulse, cold skin, trembling hands and feet. The symptoms aren't always the same and may vary from one reaction to another and from person to person.
When your baby suffers an insulin reaction, it is necessary to get high in sugar content into the child in a hurry. Orange juice, candy and non-diet sodas are frequently used to raise the blood sugar quickly. Once the reaction subsides (within 10 to 15 minutes), it is very important to give the baby some longer-acting food to prevent a recurrence of the condition. Milk, bread, or crackers are frequently used , but consult your doctor or dietician for advice.
If you find that you can't get regular food into your baby during an insulin reaction, liquid sugar substances, such as Instant Gluclose or Monojel, are available, and can be squeezed into the baby's mouth between the gums and the cheek. You may also try putting sticky jams or honey on your finger and inserting the finger into this same area.
If it is absolutely impossible to get your baby to take sugar by mouth, or if the child is unconscious, 1/2 cc of glucagon should be injected in buttocks in order to raise the blood sugar and make the baby responsive enough to take oral sugar. If there is no response in 15 minutes, inject another 1/2 cc and call your physician at once for further instructions. (Glucagon is a prescription drug, and is labeled with a specific expiration date. Make sure you have some in the house, read the instructions for mixing it before you need to use it, and check it occasionally to ensure it's not outdated.)
The frightening possibility that a reaction may occur during the night or a long nap can be minimized by giving your baby a snack before going to sleep. Discuss with your doctor and dietician which foods you should use.
Once again, unless you are using home testing of blood gluclose, it's not always easy to determine if your child is having an insulin reaction or is just feeling out of sorts. But most doctors and experienced parents advise that it is better to err on the side of too much sugar temporarily than take the risk of a more severe reaction.
The other type of diabetic emergency, called diabetic acidosis or coma, does not come on suddenly but over a period of many hours or days. It can be detected through urine tests which indicate the presence of ketones released when the body begins to consume its own fat. Be sure to discuss diabetic coma with your doctor so you can be alert to its possible onset.
Some babies are delightful eaters who seem to enjoy all foods. Others, from their earliest days, simply aren't very interested in eating. However, the baby who has had a shot of insulin must eat. This is a problem that people with insulin-dependent diabetes continually have to face no matter what their age, and it's frequently a source of annoyance to them. When dealing with a diabetic baby who is also an uninterested eater, you have a dual problem.
Different babies will call for different solutions, and you will doubtless find your own answers. Some children do better with small snacks than with larger, regular meals. When your baby is ready for "finger foods" it may be useful to have an assortment of snacks always on hand:hard-boiled eggs, sliced fruits, or whatever else you and your doctor or dietician work out. When buying commercial baby foods check labels to avoid added sugars. Blenders are very helpful in preparing nourishing baby foods with an unadulterated ingredients in your own kitchen. (Actually, all infants probably would benefit from being fed in this manner.)
Babies do sometimes vomit. When your baby has had an injection of insulin and then throws up, you will want to give him or her something which offers enough carbohydrates to ward off a severe insulin reaction but which won't further upset the stomach. Frequently non-diet cola, ginger ale, or popsicles are recommended by doctors. You should discuss with your doctor how to respond to this situation before it arises, and should notify your doctor when it does.
During illness your child may suffer a loss of appetite, but nourishment must be taken nonetheless to counter-balance the insulin. And during such times, the insulin itself becomes more important than ever. Your doctor may wish to adjust your baby's insulin dosage during any illness, even a common cold.
Self blood gluclose monitoring is a newly available procedure by which you can measure with great precision the amount of sugar in the blood at any given moment. A drop of blood is placed on a strip, which is then put into a meter which gives a blood sugar reading. Another method relies upon visual comparison of the strip with a color-coded chart.
In recent years, medical research has begun to reveal that a precise monitoring and adjustment of blood sugar to near-normal levels may reduce and possibly even reverse some of the neurological and microvascular complications to which diabetic persons are subject.
There are a number of urine testing products on the market which allow you to monitor you baby's urine for ketones and, to a limited extent, for sugar. Diapers should be changed frequently so that the urine you are testing is relatively fresh each time. Some parents prefer to use disposable diapers to avoid any foreign residue (from soaps or detergents) from being retained in the diaper. Always keep in mind that the sugar reading you get from a urine test may be a few hours old.
Give your baby-sitter a brief "course" in diabetes: the sitter must know how to recognize the onset of an insulin reaction and what to do about it. Provide the baby-sitter with fruit juice or other snack food for the baby's use in case of a reaction, plus detailed instructions. If he or she isn't interested in learning about diabetes, or seems apprehensive, change baby-sitters. There is always another who is willing, and even eager, to learn the extra things necessary in caring for your baby.
Of course you will always leave a phone number where you can be reached, as well as the numbers of a trusted and informed friend, and your physician.
When your child is old enough to attend birthday parties, you have various alternatives, depending on his or her age and disposition. You may take special foods to the party, or you may want to alert the host ahead of time to have some special snacks available. You can also rest assured that an occasional treat at an occasional party won't be disastrous for your child. Enjoying a small portion of cake and ice cream is sometimes very important.
The most reassuring way to travel with your baby is to assume that you will be delayed, tied up in traffic, have a flat tire, etc. Always have food with you. If you are going on an extended trip, carry the food, insulin and syringes, in your hand luggage-never in a suitcase, which could get lost. Insulin, by the way, need not be refrigerated at all times; any cool place where it will not overheat or freeze is sufficient.
If you are traveling some distance, ask your doctor to provide you with a prescription for syringes and information about doctors along your route. If you are traveling abroad, have a letter from your doctor explaining the syringes should your luggage be examined.
Any changes in climate, exercise, routine, or weather may bring about changes in the baby's insulin needs. Talk to your doctor ahead of time about such possibilities and be on the lookout for any changes.
Parent to Parent
Always try to remember that you, as the parent of a diabetic baby, are not alone. There are many who have been through the experiences you are having now, and it can be immensely comforting to get in touch with their parents to see how well they have dealt with the problems you currently face.
There are almost certainly parents with diabetic children near you, wherever you might live: seek them out. And, if there is a chapter of the Juvenile Diabetes Foundation International (JDF) in you community, make use of it. One of the prim reasons for JDF's existence is to offer information and support to people like yourself.
It may be hard to believe now, but babies do grow up, and amazingly quickly. Your child soon will learn to talk, and will be of tremendous assistance in judging his or her own condition. Before long, your child will be well on the way toward meeting every diabetic person's challenge, self-regulation, and enjoying a full and active life.