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What’s the most important goal for kids and families dealing with diabetes? Learn all you can, and then strive for the best possible blood glucose levels without excessive hypoglycemia. This is a tough goal to attain. Our tools, food, insulin, and monitoring, while the best they have ever been, are still imprecise. And although optimal glucose control is critical for immediate and long-term health, one must always be wary of severe and recurring hypoglycemia.
I was one of the co-investigators in the DCCT many years ago, which “nailed” the importance of getting A1c levels below 7%. There is no longer any doubt that the short and long term complications associated with diabetes reflect how well blood glucose levels have been controlled.
This means working towards pre-meal blood glucose levels of less than 100 and post-meal blood glucose levels of less than 140. Our current recommendation is to use multiple meal-time bolus doses of fast-acting analogs (Humalog, Novolog, Apidra) coupled with a basal insulin–either Lantus or Levemir–twice a day.
This regime attempts to mimic a normally functioning pancreas, while providing maximum flexibility with food and less hypoglycemia. We start with this approach at diagnosis because it is easy to teach and makes sense to us, as well as to patients and family members. Insulin goes with food for meal coverage, and then basal insulin is provided in the background.
All such insulin decisions must be based upon actual blood glucose readings, taken frequently. We use the fastest acting insulins because then we can administer insulin immediately after knowing blood glucose levels and immediately before eating meals or snacks.
Insulin pumps are also an excellent way to administer insulin and gain even more flexibility for food and activity changes, as well as further decreasing hypoglycemia. About 30% of our patients are now using insulin pumps, with good results. I suspect that the use of insulin pumps will continue to increase because they offer improved glucose control coupled with decreased hypoglycemia.
Frequent Testing is Paramount
The next big goal will be less expensive and more reliable continuous glucose monitoring. When that is achieved, more people will use continuous glucose monitors to “alarm” for trending higher or lower glucose values, rather than waiting until the highest or lowest values have already been reached.
For now, one of the keys to management involves teaching people to use fingerstick testing frequently enough. Then we must help them to actually use this information, by analyzing logbooks or downloaded BG information to look for patterns. Although the patterns change with growth and with normal changes in kids’ lives, we can continue to respond on a weekly basis–at a minimum–to such changes, and adjust either food and/or insulin accordingly.
With frequent testing, any immediate increase or decrease in blood glucose levels is known, without guesswork. This is important because many high and low episodes occur without symptoms. Some people with diabetes believe that they can tell when their sugar levels are out of control, but unfortunately, this often turns out to be wishful thinking. Doing BG testing and using the resulting information remains critical for “tight control.” This is easy to teach but difficult to accomplish because it requires sustained interest and continuous dealing with the frustrations that this illness brings to a family.
Support groups and chat rooms (childrenwithdiabetes.com, ADA’s Wizdom, JDRF, camelsrfun) are great places to go for intelligent and honest support. Camping programs in the summer, and winter programs for peers, families, and grandparents, are also good for learning about diabetes and about how others are dealing with this chronic illness.
Good Control is Important for Kids
Another key concept is the importance of blood glucose control even in very young and school-aged children. Several years ago, some misinformation was publicized based upon good research that turned out to be incorrect: Researchers wrote that the pre-pubertal years “did not count” towards complications. This turned out to be false, and many subsequent research studies have refuted this “safe” time. The notion that “it isn’t so bad to have high sugar levels for so many years because it doesn’t cause eye, kidney or nerve damage” is just incorrect.
Although the DCCT did not include such pre-pubertal children, it makes sense that the same damage that occurs with older teens and adults can occur with younger children. Of course, high sugar damage takes many years to show up, so it is reasonable to see delays in clinically apparent problems. When using sophisticated research methods, however, the forerunners of such damage are seen to exist.
So, what is the rationale then for telling children and families that it is okay to keep blood glucose levels high? The only rationale I know of involves avoiding hypoglycemia (lows). It’s important to remember, however, that treatment should include maximum avoidance of hyperglycemia (high blood glucose) while minimizing hypoglycemia that is recurrent or severe (convulsions, unconscious reactions, and hypoglycemic events needing help from others).
Scientific research has helped to liberalize food prescriptions and the strict food approaches of years past. Dietary consistency from day-to-day is still very important, however, including portion control and timing as well as food choices.
Carbohydrate counting offers the most flexibility. It’s also quite easy to teach and to understand because it couples an insulin-to-carb ratio (how much insulin is needed for how many grams of carbohydrates) to very specific food and snack choices. With a basal-bolus insulin approach or an insulin pump approach, this can help enormously.
Adding the glycemic index approach is helpful because it explains how to use simple sugars (juices, fruits, candy) for immediate coverage of physical activity, thereby preventing hypoglycemia. It helps explain the differing effects that foods such as potatoes, bread, rice, pasta and beans, as well as high fiber grains, have on blood glucose levels. It’s also helpful to know that mixing carbohydrates with high protein/high fat foods slows down stomach absorption, which explains the delayed hyperglycemia that occurs when such foods are eaten.
Diabetes has always been in the forefront of psychosocial research aimed at understanding the behavioral component of dealing with chronic illness. What we now call the Empowerment Model is very helpful because it allows health care professionals to avoid getting frustrated when patients and family members do not make the same choices as we would. It also shifts the focus to helping people take responsibility for their own decisions, whether for their children or for themselves.
As kids grow and mature, they should take on more self-care responsibility and be taught how to go about making such choices. This should not be done too early, since parental supervision is required even for many adolescents. Open and honest discussions should involve such topics as how well everyone is doing, what choices are actually being made, and how the A1c values reflect such choices.
Eating disorders, abusive family situations, depression, and learning disabilities often interfere with diabetes care for children and adolescents and should be considered when things are not going well. Families disrupted by poverty, divorce, and other such issues need extra assistance in order to place the stresses and burdens of living with diabetes into proper context.
Normal adolescent rebellion is a fact of life, yet can destroy diabetes health if taken too far afield. Here again, supervision by the diabetes team, coupled with family involvement and honest, empowerment-style discussions, can help not only identify such problems, but also figure out workable solutions. Adolescence is not automatically a time for diabetes havoc. The underlying reasons for such problems must be acknowledged and investigated, even if it means adults need to resume more direct responsibility for care-giving.
After an adolescent finishes high school, there is a period of transition with more direct self-care, and often a movement away from close diabetes team follow-up.
This can occur with health insurance changes and also with going away to college. It involves issues of sexuality and dating, pregnancy prevention, alcohol, smoking, marijuana, and drugs, as well as BG monitoring, timing of food and insulin, sleeping late, and overall erratic lifestyle and schedules. Obviously, all this can cause major problems when interacting with diabetes care needs, and frequently this is a time when diabetes control suffers.
It’s often helpful to address these issues up front, discuss them, and strategize about what might be an alternative. Whether or not to stay with the pediatric and adolescent diabetes team of health care professionals, to find a new group at school, or to switch to an adult diabetes team should also be reviewed. Our patients often opt to stay with us for their diabetes specialty care, although they switch from pediatricians to family physicians or internists for their primary care.
The problems facing children with type 1 diabetes around the world are remarkably similar. Sound psychosocial support, empowerment, and physiologic intensified glucose control remain the cornerstones to success with kids and adolescents.
Dr. Brink’s Top Ten Tips
1. Aim for as near normal blood glucose levels as possible before meals (100 is the magic number to remember).
2. As a secondary goal, aim for as near normal post-meal blood glucose as possible (less than 140, if possible).
3. Aim for A1c levels below 7% (assuming normal levels are approximately 4-6%); this gives optimal control and minimal hypoglycemia under most circumstances.
4. Understand that it is not possible to have such results 100% of the time.
5. Do blood glucose testing frequently.
6. Have diabetes appointments at least every three months. In the DCCT, we achieved results in the intensive treatment group by seeing people every month, so this schedule should be considered. It has long been our own team’s philosophy.
7. Work with dietitians and nurses as well as physicians.
8. Work with psychologists, social workers, and other support staff who can help with behavioral issues as often as needed.
9. Identify family genetic risks: heart, blood pressure, weight, smoking, lipid, thyroid, and celiac problems.
10. Monitor the above-listed risks at least annually, because they are more common in youngsters and adolescents with type 1 diabetes.