AN INFANT WITH DIABETES

by Ed Bryant

Annie McMillen is 22 months old. She was diagnosed with type 1, insulin-dependent diabetes at age 12 months, and has had a very rough time since. According to her parents, Brian and Cindy McMillen, Annie's sugars fluctuate from so low they cause "seizures" (as she terms them), to 450mg/dL and higher. She has these convulsion (described by her physician, a pump-using diabetic, as due to extreme hypos) in her sleep, or awake, with little warning. On different days, the same food intake, same exercise, same insulin, same carbs (her mother feeds her by the carb-counting system)—but different results. She currently uses Ultralente and Humalog insulins, but has tried other combinations.

As her mother describes it, at midnight, Annie's blood glucose reading may be 330mg/dL, but at 1 a.m. (Ultralente almost over, not enough left to cause a big drop), she wakes in a convulsion—choking and thrashing about. Her mother says it is as if the insulin decides to go into storage, then abruptly releases, acting as if it is peaking, when by rights it should be ending. A blood glucose reading at this time, without fail, indicates severe hypoglycemia, (about 40mg/dL). Her physician has confirmed this reading, so the child is not epileptic.

She has even had such convulsions one half hour after eating a full meal. When they happen, her mother says, "I will have to force a medicine syringe in her mouth, containing chocolate syrup, glucose gel, etc, even if she is full... People stare at us and probably wonder what is that woman doing to that poor baby." (Cindy also uses Glucagon injections to treat Annie's lows).

Annie's blood is tested six to 12 times a day, and she takes two to four shots (in different injection sites around her body, but not her stomach...) Her mother has had to quit work to stay with the child full time.

I told Cindy that in spite of Annie's small size, injection into the stomach area would probably work, especially with the new smaller needles—that she should check with her doctor. I warned her that if Annie were unconscious, forcing a liquid into her mouth could cause aspiration into the lungs, and that she should check that with her doctor as well.

I sent Annie McMillen's story to several diabetes newsgroups on the Internet, and asked for suggestions. Responses, mostly from parents of other diabetic infants, raised a number of useful points.

1. Many were surprised by her doctor's selection of long-acting Ultralente insulin. Others were concerned with Annie's use of energetic, quick-acting Humalog. Most alluded to giving their children mixes of Regular insulin and intermediate-acting NPH. "My gut feeling is that this child is taking too much of the wrong kind of insulin," said one respondent.

2. Recognizing that a small child may need a small dose, several of these parents told of diluting their child's insulin, to U50, U25, or even U10 strength. (NOTE: Insulin dilution should only be done after conferring with your doctor. Follow procedures EXACTLY!).

3. Some respondents commented on Annie's injection sites. As her mother described, Annie's insulin is given in arms, legs... but not the stomach area. Degree of exercise after injection affects insulin absorption. Different injection sites have different absorption rates. Many health professionals now recommend insulin injection into the abdomen, for better and more consistent absorption. Incidentally, I find injections there less of a bother than sticking an arm or leg.

"We've found the stomach to be a great place to give injections," said one parent. "In fact, our daughter says they hurt the least there. The biggest problem we have is that she finds it ticklish and sometimes won't hold still. She doesn't have much fat there, but we use an Inject-ease [automatic insulin injector] with spacers in it (to make the needle shorter) and it works well."

Another parent reported: "I find legs and arms are far less predictable for absorption of insulin than stomach or butt—and would think that youngsters use their arms and legs a lot more than me! Children don't have a daily routine like we do. They'll play hard one minute and sleep the next."

4. One parent raised a point not often considered: "Small children have growth spurts which result in counter-regulatory hormones being released (typically through the night). This may cause some of the high readings. Perhaps a while after the hormones have all been released, the lows set in. Also, the amount of hormones released may differ each night."

Another stated: "I know what she is going through, as my daughter has had the seizures due to extreme lows twice. One was the result of a growth spurt.....another common reason for lows in small kids."

5. Another point was the periodic presence of endogenous (pancreatic) insulin. Some type 1 diabetics experience periodic insulin spurts, for a few months after diagnosis (sometimes termed the "honeymoon effect"). The pancreas hasn't quit yet, and this extra insulin can make management a problem. Annie's physician believes this may be the case. I note, however, that all type 1 diabetics do not experience such a remission period. I did not.

6. Many diabetics whose sugars are in poor control experience "rebound." Carbohydrates consumed to correct a low can overcorrect, causing a high. Attempting to reduce that high can cause another low. This can add to the general instability.

To get a veteran pediatric endocrinologist's perspective, I took a look at "Diabetes in the Infant," by Richard A Guthrie, MD, CDE, FAAP, which was published in VOICE OF THE DIABETIC, Volume 3, No. 4, Fall 1988. I have reprinted passages pertinent to this case:

Diabetes increases in frequency with this age group, and at least in our part of the country (the Midwest), is fairly common. Onset is usually very abrupt, progression is rapid, and there is usually no remission or "honeymoon period." These children are quite "brittle." Add to this the fact that these children are learning to walk (thus having very erratic activity patterns), and developing peculiar eating habits. The rate of growth decreases rapidly after one year of age, as does food intake...

Diet must be modified to meet the food peculiarities of these children. In general, they will not eat foods that require much chewing, but do well with cheese, peanut butter, wieners, Vienna sausages, and soft finger foods. Innovation by mother and nutritionist will be needed at this important time, to devise a diet, which will change frequently as the child gets older. Insulin needs will also change, and may be hard to calculate, due to the erratic eating habits and completely unpredictable activity of the toddler.

At this age, I usually convert the insulin to a more even distribution, of three doses/day of regular and NPH insulin in the morning, Regular insulin at suppertime, and NPH at bedtime. About 2/3 of the insulin is given in the a.m., (roughly 2/1 N:R ratio), and the remainder divided between the supper Regular and the bedtime NPH, based on the blood glucose profiles.

Here are some principles that are useful in the management of diabetes in young children:

1. Insulin and dietary requirements of children are never static, and must be constantly updated to meet needs of growth.

2. In children under the age of five years, the brain is still developing, and is, therefore, much more susceptible to damage from hypoglycemia than is the adult brain. It may be better to run slightly higher rather than lower blood sugars. This is especially true in the younger child. Treatment of hypoglycemia should be prompt. Parents should always have Glucagon on hand, and should know how to use it.

3. Insulin doses can be very low in small children, and changes or errors of even one unit can be devastating. It is important in small children (or in older children in the remission period, when insulin doses are small, to dilute the insulin to U50, U25, or even on occasion to U10. The new 30-unit syringes may help with this problem.

4. Multiple-dose insulin schedules based upon short-acting regular insulin will work best for control, because frequent changes will be needed, and can be made better with short-acting insulin.

5. Frequent blood glucose measurement must be performed—even though no one likes to stick a small child any more often than necessary. Changes of insulin dose based upon SBGM (self blood glucose monitoring) are best made using patterns rather than chasing individual blood sugars. Children are so erratic that dosing based on an individual blood sugar may result in severe hypoglycemia. It is better to do blood glucose measurements several times a day, record the values over a several-day period, then make adjustments based on the pattern of blood glucose values.

(Editor's Note: When frequent blood testing of an infant is necessary, other sites than the fingers can be used. Some authorities recommend earlobes and heels.)

Diabetes in the infant and toddler can be a difficult and frustrating illness to treat. It is my opinion that these children can be adequately managed, but expertise is required. I believe referral to someone with expertise in children with diabetes in this age group, who has access to a team with similar experience, is necessary to ensure optimal growth and adequate control. Care of such children is difficult and often times frustrating, but the outcome can be very rewarding when the process is done correctly. (NOTE: When Dr. Guthrie wrote this, Humalog insulin had not reached the market.)

This brings us to the last point—what about Annie's health care team? As one parent put it: "She needs a better relationship with her doctor. If that is impossible, switch doctors. We interviewed several before we found one whose management style and support team were compatible with us. That is the other step: Does her doc have a great support team? I personally feel that the educator and the nutritionist have helped me more than my doctor. She needs a good support team."

Managing type 1 diabetes is a complex operation. With an infant or young child, it is that much more complex, and often becomes, as the McMillen's have discovered, a full-time job. This is why the team approach is critical. A family with a diabetic infant needs the service of a pediatric endocrinologist or diabetologist, but they also need the input provided by the dietitian, the diabetes educator, and, often, the social worker or pediatric psychologist. The burdens are many, and the stresses, on the family, as well as the child, can be intense. A diabetic support group can be a good idea, too.

Small children with diabetes need to see the doctor more often. Childhood is a state of full-time metabolic change, so diet, exercise, and insulin regimens can change almost by the week. Childhood illnesses (they are frequent) can cause havoc with blood glucose levels, and consequences (like ketonuria or dehydration) that take days or weeks in older diabetics can occur to infants in hours. Parents and primary caregivers need quick access to relevant information, so they can intervene decisively and correctly. And, parents, like Brian and Cindy McMillen, need to have their contribution recognized. Raising a diabetic infant is a family operation; it takes a lot of love. Parents deserve our respect.

With care, the challenges raised by diabetes in the infant or toddler can be met. Unpleasant, even frightening at times, they are not insurmountable. As the child grows, diabetes management should get a lot easier. Hang on, Annie, there's light at the end of the tunnel.