Once a child is diagnosed with diabetes, he or she and their loved ones receive several hours of education about how to manage the disease from a diabetes educator. They learn about how to interpret blood sugar levels, how to administer insulin, what signals an emergency.
“When a child with diabetes is diagnosed, the whole family needs to be involved. Everyone is affected by the stressors and everyone can play a supportive role,” says Irene Sills MD, a professor of pediatrics at Upstate.
Parents may feel overwhelmed by the amount of monitoring and decision-making in the beginning, but they are well supported by the nurses and doctors who are only a phone call away. However, after they master the skills, they may be afraid to leave their child in anyone else’s care. Siblings may feel they get less attention than the child with diabetes. This is where extended family and friends can step in to assist, if they take the time to learn how.
Sills’ advice begins with how to address a child with diabetes:
* Don’t call kids with diabetes ‘diabetics’ because that labels them as their disease. They are children and adolescents first.
* We reassure them that this is not their fault or the fault of their parents. The exact cause of type 1 diabetes is unknown. Although we have learned much about the pathophysiology of diabetes, we have no idea how to prevent type 1 diabetes.
* Combat misinformation – no, children don’t “grow out” of diabetes, and no, there is no cure – by learning about the disease . Resources are plentiful on web pages for the American Diabetes Association, the Juvenile Research Diabetes Research Foundation and the New York State Department of Health, as well as Family Support Network’s online community at childrenwithdiabetes.com.
* Blood sugar levels have to be checked four to six times a day, and insulin may have to be administered as frequently — either through injections or via a pump whose catheter requires changing every three days. Overnight blood glucose monitoring to prevent low glucoses is also important, “especially for young kids whose brains are still developing and may be harmed by repeated low glucose levels,” says childrenwithdiabetes.com
* Create an emergency box containing liquids with calories, liquids without calories, a thermometer and emergency medications. Similar boxes should be kept in places where the person with diabetes spends lots of time, such as grandparent’s homes.
* While we encourage healthful eating, the dietary limitations the we enforced in the past decades are not really necessary. We have learned that it is important to take insulin for carbohydrates even if they are sweet carbohydrates, Sills says.
* Insulin pumps, portable insulin and the prevalence of cell phones have made excursions such as overnight camping trips possible.
* A variety of new insulin regimens are helping to reduce the risk of low blood sugar. Long-acting insulins provide basal coverage quick acting insulins are injected for meals and even after meals in some situations. “For anyone who has given a toddler an injection of regular insulin and then watched them refuse to eat, the ability to inject after the meal is a major benefit,” says childrenwithdiabetes.com
* Depending on maturity, children from 10 or 11 may be able to give their own injections, and children from age 12 or 13 can become increasingly responsible for monitoring their sugar levels and deciding on insulin dosing. However, all adolescents still need the help of their parents and guardians.
* The children whose diabetes is well managed are those whose parents are most vigilant about their care. These children need to see their doctor every three months and have tests of glucose regulation performed at those times.
* Celiac disease is relatively common in people with type 1 diabetes. This is an autoimmune disorder that occurs when the body reacts to a protein called gluten, found in grains such as wheat, barley and rye.
* When a child with diabetes starts looking at colleges, available health services in the college community are an important consideration. So are roommates who can help the student manage diabetes in a friendly, supportive manner.
* Alcohol use is one of biggest dangers for children with diabetes. Not only can alcohol cause high or low blood sugar, children with diabetes who become drunk cannot reliably monitor their blood sugar levels.
* Birth control is important for women of childbearing age because diabetes needs to be in good control at conception and early in pregnancy for the best odds of having a healthy baby.
* Children with diabetes are at increased risk for mental health disorders, Sills says, “because they live with a chronic disease, there can be many stresses and pulls and tugs. Depression and low self esteem are concerns. . If they do what they’re supposed to do, (such as counting carbs, monitoring r blood sugars and giving insulin injections) it’s very demanding ” Blood sugar levels that are a little high or low can create angst and kid may tend to blame themselves. Those kids who find it hard to do all the thing we ask of them can also feel terrific guilt.
“We have better tools to treat diabetes today, but one can’t underestimate how challenging it can be to live with this chronic disease,” Sills says.
