Gary Freitag is frustrated by his three-year-old son William's blood glucose numbers. Diagnosed just this past February, William's BGs frequently bounce between 65 and 300. At night when William goes to bed, even if his blood sugar is as high as 400, Gary and his wife must give William a snack or by morning his blood sugars will be down to 50.

Every day Gary gives his son a single three-unit shot of NPH insulin in the morning. His body is still producing some insulin, it seems, and when Gary tried to use two daily shots William bottomed out at night.

Being a small child, everything affects William significantly. Gary solved one low morning blood sugar problem by adding just a tablespoon of raisins to William's bedtime snack. Adjusting William's insulin by just half a unit can throw his whole schedule off.

"The first thing you learn (at diagnosis) is what the numbers should be. Then you realize it's impossible to do that for any length of time," Gary says. "A lot of the information and literature you read is for adults."

According to Gary, William's doctor says she likes William's numbers and would rather have him running high than risk lows. But Gary, an engineer by trade, would still like to find a way to achieve control.

"The literature says you shouldn't be giving food to somebody when they're high," Gary says.

And he is right-at least for adults. The Diabetes Control and Complications Trial (DCCT) gave the world empirical evidence that the best way to avoid diabetic complications is by tightly controlling blood sugars. But the youngest people in the DCCT were 13 years old.

Balancing Act

Participants in the landmark study who used multiple injections to tightly control their blood sugars were able to stall or eliminate the onset of complications. But they were also three times more likely to suffer a severe hypoglycemic episode. Managing diabetes DCCT-style amounts to a balancing act-the risk of hypoglycemia vs. the possibility of fending off long-term complications. But for young children this balancing act is magnified by their inability to make decisions and take appropriate actions by themselves.

Denise Richards, a diabetes educator at the New England Diabetes and Endocrinology Center, says she has found that on average kids aren't able to consistently take the actions necessary to correct low blood sugars until around the age of nine. This leaves parents and care-givers with the difficult responsibility of deciding how aggressive insulin management should be.

When Blood Sugars Count

To make this decision even more difficult, it is not clear what effect tight control has on children before puberty.

"The answer is not in," says Margaret Grey, associate dean of research and doctoral studies at Yale University. Grey explains that there are two ideologies on management for children. Some people feel the clock is always ticking toward complications, so numbers should always be kept as low as possible. Others feel puberty is the real starting point for that clock and since the risks of complications before puberty are minimal, keeping children a little high can curtail other serious problems. Both ideas are supported by medical literature.

Supporters of the latter theory point to a study published in the November/December 1989 issue of Diabetes Care.

The study combined the efforts of the University of Pittsburgh School of Medicine, the Children's Hospital of Pittsburgh and the Ear and Eye Hospital of Pittsburgh. Following up on the fact that microvascular complications are almost never seen in pre-pubertal diabetic children, the combined Pittsburgh team looked back at 2,670 people who were registered with the Children's Hospital of Pittsburgh's diabetes registry.

The team compared duration of diabetes and the onset of nephropathy and retinopathy. They found that diabetic subjects diagnosed during or after puberty had developed these complications faster than people who were diagnosed before puberty. But when researchers ignored pre-pubertal years. and only counted years after puberty, they found that complications developed in similar time frames for both groups.

In short, the study indicated that the effect of pre-pubertal diabetes was minimal in terms of nephropathy and retinopathy. In addition the study suggests that mortality rates are equivalent only when measuring post-pubertal diabetes. The years people had diabetes before puberty didn't seem to factor in at all.

Pre-Pubertal Risks

A more recent study, appearing in the August 1993 journal Ophthalmology, rebuts the Diabetes Care article, indicating that pre-pubertal blood sugars do have an impact on complications-specifically retinopathy.

"The time before puberty matters," says David Goldstein, MD, a professor of child health at the University of Missouri Health Sciences Center, who led the study.

Goldstein and his colleagues followed 420 type I patients for 12 years. None of the participants in the study had retinopathy at the start of the study, and all were under the age of 21. The researchers noted when retinopathy was first detected-which it was in literally every participant-and when proliferative retinopathy was detected.

Goldstein measured duration of diabetes in post-pubertal years, excluding the years before age 11 for females and age 12 for males. However, he found that people who had had diabetes before puberty developed retinopathy more quickly than those who were diagnosed during or after puberty.

"Control matters," Goldstein says. "It matters in adults and it matters in kids."

Goldstein acknowledges control must be tempered by risk of hypoglycemia and within reasonable lifestyle expectations, but he says he encourages all of his patients to control their blood sugars as best they can.

"I push to the limit with every patient," Goldstein says. "Patients of all ages should do the best that they can do."

Grey says she walks the fence but tends to side with letting the numbers run a little high.

"I tend to go for 'tight as you can with no risk'," Grey says.

Playing It Safe

Penn McClatchey of Atlanta also chooses to let his six-year-old son Mason's blood sugar be a little high, usually between 150 and 200.

When Mason was first diagnosed, Penn learned of the DCCT and wanted to keep Mason as low as possible. But Mason's endocrinologist advised the McClatcheys otherwise.

Because it seems young children have at least some immunity to complications, Penn was told to let the numbers be slightly higher than would be desired in an adult. He was informed that there was evidence of learning disabilities in children who had experienced severe hypos, and "when in doubt give him juice."

According to Penn, more intensive management is also simply not practical because Mason is in school.

"Mason is 'accommodated'," Penn wrote in an e-mail to Diabetes Health, adding, "If he were reeling off into lows on a weekly basis, I do not think they would handle it correctly. The school is awash in good intentions, but elementary schools tend to be chaotic. Does one trust his child to well-intentioned chaos?"

Penn solves this by relaxing Mason's control, but he is still sometimes worried. "I am not completely sure what we are doing is the right thing," he says. "It can't be good for him to be high."

Penn is faced with a very difficult decision. "Rhetorically, what is worse? High A1Cs or risking brain damage? Clearly the answer is personal and unique to each child, doctor, their environment and temperament," Penn wrote in a recent Internet discussion on managing children's diabetes.

High Numbers Do Not Necessarily Mean Less Managed

Inger Hansen, MD, the medical director of Eglestons Child Specialty Center, where Penn takes Mason, feels that the idea of good management doesn't necessarily have to go hand in hand with hypoglycemic risks. She says children should be a little higher than adults, but not necessarily less managed.

Hansen says she encourages parents of children under five years old to aim at keeping blood sugars in the 100-200 range. The range moves down to 100-180 for children between five and seven. Hansen points out that most children will not be able to stay in this range, but by setting the target a little higher parents can lower the chances of severe lows.

Kenneth Gabbay, a professor of pediatrics at Bayer College in Houston, also recommends good control, but perhaps not great control.

"Growth and development during childhood is the most important thing," Gabbay says. "We're not going for the kind of control in the DCCT."

A hypoglycemic attack can be a very hard thing for a child to understand, Gabbay says. "We don't want (children) to be afraid of their own shadow," he explains. "No one wants to go into convulsions in the middle of the night."

Gabbay says most of the children he works with use two daily shots, with a low percentage going up to three. Four he feels would be too many.

Kids Are Kids

Another factor to be taken into account, according to Gabbay, is the impact management has on the lifestyle of a child. Gabbay says that because a child is going to school and interacting with other children, the effect of a regimen must be weighed against its impact on the child's relationships.

Kathy Marshell, a diabetes educator at Eglestons, shares this concern.

"We don't encourage children with diabetes to be pulled out of the main stream because of their diabetes," Marshell says, adding that sometimes people put a little too much emphasis on the disease.

"Children are children first," says Linda Popky, whose five-year-old daughter Ilana was diagnosed with type I diabetes three years ago.

Linda says she makes a conscious effort to let Ilana be as normal as possible. But to Linda part of making Ilana feel normal includes closely watching her diabetes.

"When she goes to a birthday party we always let her eat birthday cake," Linda wrote in the Internet discussion. "How much, whether she gets any frosting, etc. depends on her number. One thing we do is eliminate lunch or a snack if necessary so she can eat the cake and ice cream. That meal might not win awards for being nutritionally balanced, but we get the number of carbos/starches relatively close."

Linda says she lets Ilana's numbers be a little high, but she does use a regimen of three insulin shots per day.

"Even if the clock starts ticking at puberty, habits are getting formed," Linda says.

Control With Regular and NPH Mix

Linda has found that using multiple injections better controls the highs and lows. Ilana used to take two shots-mixtures of Regular and NPH-one in the morning and one at dinner time. But on this schedule the NPH, which can metabolize quickly in children, would peak at two in the morning, risking a low and forcing Linda to wake Ilana to feed her. Now Ilana takes a mixed shot of Regular and NPH in the morning, a shot of Regular with dinner, and a shot of NPH before bed. This has pushed the NPH peak back to around six or seven in the morning, making the peak coincide with Ilana's natural morning rise in blood sugar.

This schedule also allows the whole family to have a more flexible dinner schedule. Linda thinks Ilana's blood sugar might even become better controlled by using a dinner dose of Humalog-Eli Lilly's new super-fast- acting insulin-instead of Regular.

While this may seem to be an aggressive approach for a young child, Linda says Ilana never goes very low. This may be due in part to the fact that Ilana is still honeymooning (producing insulin on her own), but Linda also doesn't try to treat mild highs.

Ilana's target range is between 100 and 200 according to Linda. And while this has helped keep Ilana from dropping low, it is not without its drawbacks.

"She doesn't feel well when she's high," Linda says. According to Linda, if Ilana's blood sugar is between 200 and 250 Ilana will tend to act giddy, almost drunk, and levels above that can put Ilana in a foul mood.

Not A Simple Choice for Anyone

Dr. Stuart Chalew is an associate professor of pediatrics at the University of Maryland who realizes that controlling children is a complex issue.

Some children may be honeymooning and easy to control, says Chalew, while others may bounce all over the map because of growth spurts and influxes of hormones. Patients and families must decide individually how best to control a child's diabetes.

"I'm here to support what they (the parents) are doing and make their lives easier," says Denise Richards. She says she does not criticize parents for too much testing. "Everybody is so individual."

Richards works with many pre-school-age kids with diabetes at the New England Diabetes and Endocrinology Center. She says the Center usually goes for aggressive control-some kids use up to four shots a day-but only if the parents and children are up for such a regimen. However, Richards adds that she tends to see less severe hypoglycemia in children using an aggressive regimen rather than more.

Laurie Holtz is hoping this will be true for her son Ben. Ben is five and was diagnosed three years ago.

Using a regimen of three shots a day has kept Ben's A1C levels to about seven. But Laurie says Ben's blood glucose is very erratic, and he has experienced several hypos. Luckily they don't seem to have had a permanent effect on Ben.

"One seizure in three years is acceptable to us," Laurie says. "We worry about complications because he developed it (diabetes) at such a young age."