This is a topic we come back to often because children are our future and keeping diabetes under control in a child will help control complications later on. When a child develops diabetes, the family develops it and we as families must learn how to help our children through the first years and all the years thereafter until they can care for themselves. Why are these first two years so important?
A study in Diabetes Caree: Vol 16. no 10; 1330-1336; Oct'95 by Margaret Grey. DRPH, FAAN, CPNP et al looked at the Psychosocial status of children with diabetes in the first 2 years after diagnosis. They followed 89 IDDM children ages 8-14. What they found makes sense when you think about it, but the results makes one step back and plan for the future of one's child who has just been diagnosed. It makes it mandatory that we have plan A and B in the thought process and maybe even a plan C to help our child and the family. The results were that after an initial period of adjustment, children with IDDM have equivalent psychosocial status to children without IDDM, but two years after diagnosis, they experienced twice the amount of depression and adjustment problems as their peers. The researchers suggested this is a critical period for interventions. Why does this time frame make sense? Children in this group were very close to magical thinking. When the finger pricks, injections, low and high blood sugars, and restrictions do not go away even when the child tries his/her best, of course the magical thoughts are attacked and reality begins to show itself. With this will may come anxiety and depression.
So how has treatment of diabetes in children changed over the last 30 years? First of all then diabetes was simply treated with relatively infrequent injections of long-acting insulin. These resulted in poor metabolic control and therefore a high incidence of diabetes-related complications. Advances over the last decades include a greater understanding of the physiology of blood sugar maintenance and the ability to achieve "tight" control. We have new technology and tools to maintain tight control on a daily basis and proof that such control has vastly improved lowering the risk of diabetes-related complications. However, experts do find the process burdensome. Parents say that it's hard to keep advantages in perspective when diabetes requires so much work on a daily basis. If you read the articles in our web site you know that progress is in the pipeline with less invasive tools for monitoring blood glucose levels, more automatic and continuous monitoring devices, more flexible insulins, and noninjectable insulins. Most researchers believe that a cure for type 1 diabetes as well as a way to prevent the disease are possible.
Teen age years can be difficult for many children, but most weather them well. For the child with diabetes it used to be a time when they were to manage their disease. Now, however, it's common for parents and siblings to get involved and stay involved. This approach treats the family as a partner with the health team and the health team acknowledges that the child's family is the primary focus in the child's world.. Why this shift? Changes in self-care standards for diabetes and more knowledge about adolescence, as well as the long-term complications of diabetes, are responsible for this change in thinking. Today's technology and scientific advances makes self-care more burdensome. As we stated before, in the 60's and 70's a teen would have taken 1 injection a day and monitored blood glucose levels with urine samples because glucometers weren't available. If they saw a doctor every 6 months, they got a blood glucose reading every 6 months.
Teens go through growth spurts which trigger growth hormone peaking overnight. This works as an antagonist to insulin so teens can have high morning blood glucose levels. To make matters worse, during these teen years this hormone peaking can be irregular, which can cause fluctuations in appetite and eating behavior, it can leave glucose levels at highs and lows on different mornings, and it can affect blood glucose levels as the teen stops and starts eating as appetite changes. Add to this the changes in the ability to schedule the life of the average teen with classes, activities and sport and you can see how complicated this can become. Recent research at Joslin indicates that the more active a parent is in diabetes management tasks such as helping monitor glucose levels, the more likely the teen could keep up with the rigorous tasks that lead to better metabolic control.
The goal for treating teens is to keep them healthy in the long term while fostering a positive body image and sense of self. It is better to praise a child for going in the right direction rather than chastise for not reaching perfection. For teens a hemoglobin A1c of under 8 is a realistic goal. This is the time to help a teen to see that the monitor only reflects the need for a certain amount of insulin. 300 is the same as 100 in that you need to know how to react to that number. It is best that parents are nonjudgmental but interested when teens check blood glucose levels and give themselves injections. This is true because skipping insulin shots can be common in teens and we all know what that can mean. Many teens won't keep records of their blood glucose levels because they see them as private. Having understanding parents who can help problem solve when a teen is overtaxed by tests, sports, etc. can be a relief. Teens may be in a defying period of time. They may not want to have diabetes any more, and sabotage treatment. With teens, give facts - cold, honest facts. Tell your teen about what will happen if he/she drinks too much while taking insulin and how this may effect relationships with friends. Experts today talk about taking baby steps to teaching your child how to deal with diabetes until the transition to total care has been made to young adulthood. At this point both the parents and child benefit because both become independent. It's easy to say "You have to let go", It's infinitely harder when your child has a disease which can cause havoc in his/her body if not cared for properly.
Now for some good news about just what we spoke of at the beginning of this article. The JDF announced the passage of the Children's Public Health Act of 2000 which includes important provisions that address the study of and search for a cure for type 1 diabetes. These provisions were championed by Senator Susan Collins ( R-ME) who introduced them in a separate measure. The pediatric Diabetes Research and Prevent Act (s2879), on July 17th. Among other things, this law provides for a national effort to discover preventive and curative measures for type 1 diabetes, including a vaccine. It will also establish long-term studies for people with type 1 diabetes at the National Institutes of Health, where individuals will be monitored for ten years or more. These long-term studies will examine the disease, medical histories, development of complications, and other factors. It will provide an invaluable basis for identifying potential environmental triggers for diabetes.. The Act will create a national program supporting regional clinical centers to study children with type 1 diabetes. The act also creates a diabetes monitoring system to precisely estimate how many Americans have diabetes, observe complications and determine the incidence and prevalence of diabetes. The remainder of the Act provides for many important health measures including maternal and infant health, injury prevention, pediatric health promotion and pediatric health. Sometimes good things come out of Washington. Why not thank the good Senator from Maine. With this good news we end this article with an admonition to the parents of children with diabetes: Keep in touch with your child's health care team. Help your child to independence, but don't push them out the window and tell them to fly. It's a long way down. Remember that there are a lot of people out there who are trying to help with the cure. Get involved. The ADA and JDF have many programs. Money is not the only thing you can give. Your time in invaluable.
