My office used to receive phone calls about once a week asking if we held support groups for kids with diabetes. I had honestly never thought to have one. Why would any kid want to come to a support group when there are cartoons to watch and siblings to torment? But finally, I agreed to give it a shot.
It was an epic failure and a rousing success all wrapped up in one.
The kids were miserable. They ranged in age from 4 to 14, which may have accounted for some of the struggles I and my staff had in getting them focused. As much as we tried to engage them in fun social activities, the younger ones were incapable of holding still, and the older ones slouched in their chairs with looks on their faces suggesting thoughts such as, “This is stupid. I’d rather be on Facebook.” About the only time they would look up was to check the clock.
The parents, on the other hand, had the time of their lives. We had coffee and snacks for them in the other room, and I could hear them laughing and carrying on. Some of the snippets of conversation I overheard stuck in my brain:
“…you wouldn’t believe the food stash I found under his bed…”
“…if she remembered her meter like she remembered her cell phone…”
“…anyone else have bloody test strips all over their house?…”
“…we change his pump while he’s sleeping so we don’t have to sit on him…”
“…exercise? You’ve got to be kidding…”
All things considered, it was some of the best venting I had heard since the HVAC convention was in town. It was then that we decided to give the kids a reprieve and instead start a support group for parents of kids with diabetes.
For years, the group met, shared some things, learned some things, and taught me a thing or two. I already understood how complex it can be to manage diabetes in a growing child, having worked with so many over the years. (I was lucky enough to be diagnosed at age 18.) But I also learned that parenting a child with diabetes is very different from having diabetes. For example, when my blood glucose level is high or low, I deal with it and move on. But when their child’s blood glucose level is high or low, most parents become frustrated, dwell on it, and feel a bit guilty.
One of our most productive parents’ meetings was an impromptu discussion of tips for a family dealing with a recent diabetes diagnosis. From that discussion (and with a bit of refinement on my part), we developed our own “Top Ten” list of techniques for managing blood glucose in kids. (Most of the same principles can be applied by adults managing their own Type 1 diabetes.) It goes something like this:
10. Persistence pays
Parenting is a never-ending challenge, and so is diabetes care. Parents need to stay involved in their child’s management even when he is old enough and mature enough to perform many of his daily self-management rituals on his own. Your involvement keeps your child accountable and on his toes.
That’s not to say that the parent who usually oversees the diabetes tasks can never take a break. Ask someone else to help handle your tasks or oversight for a day or two. And give your child opportunities to indulge in favorite foods or ease back on exercise, record-keeping, and frequent blood glucose monitoring once in a while. Just don’t ever miss the basic things that keep him out of immediate danger: taking insulin, and checking blood glucose at least a few times each day.
9. Build structure
Maintaining daily routines helps to keep blood glucose levels in target range. But it can be a challenge, because we all know about the odd appetites, habits, and assortment of activities that pervade kids’ lives. The fact remains, however, that kids thrive in a structured environment. So look for ways to have your child eat meals at consistent times, play or exercise at regular intervals, and go to bed and get up at about the same times each day. In addition, check blood glucose levels, take insulin, change pump infusion sets, and so on on a schedule. The more consistent your child’s daily life, the more consistent and predictable his blood glucose levels will be.
8. Support year-round exercise
This deserves special attention because of the tremendous influence physical activity has on blood glucose regulation. Often, kids get involved in sports or other physical activities that are intermittent. They may be very active on weekends and “slugs” all week. Or they may run like crazy in the summer and fall, then sleep their way through the winter and spring. These types of inconsistent activity patterns cause major changes in insulin sensitivity, or how well the body’s cells utilize insulin to lower blood glucose.
As mentioned in item 9, above, consistency counts. And that goes for physical activity as well. Encourage your child to stay physically active on a regular basis, year-round, and provide the support he needs to do that. And remember, if all else fails, there is nothing more effective than leading by example!
7. Keep records
As annoying and time-consuming as it can be to keep written records, there is nothing like them when it comes to achieving and maintaining high-quality blood glucose control. Sure, you can upload the data from the memory of your child’s meter, pump, or continuous glucose monitoring (CGM) system to your computer. But there is a psychological advantage to writing something down: It makes us instantly accountable for our actions. And if the records are kept in a format that is easy to analyze, they let you take a step back and see how things are going.
In general, I find that people who keep written records are able to achieve better control than those who do not. Records should certainly include blood glucose levels, but they can also include factors that affect blood glucose levels, such as insulin, carbohydrates, and physical activities. Many people find that blood-glucose-only records work fine until a problem comes up. Then, more detailed records enable more effective troubleshooting. A series of log sheets that can help with record keeping can be found at my website, www.integrateddiabetes.com/logs.shtml.
6. Think like a pancreas
A person’s insulin program should match his body’s needs as closely as possible. In a person who doesn’t have diabetes, the pancreas takes care of this by releasing a small amount of insulin around the clock and larger amounts after eating, when a lot of glucose is entering the bloodstream. It also makes minor adjustments throughout the day as a person’s insulin needs fluctuate because of exercise, the release of other hormones, etc. The ultimate goal is to keep blood glucose levels in a fairly narrow range, so that the cells that need glucose have it when they need it, and so that the bloodstream is not inundated with sticky glucose.
A person who has Type 1 diabetes (and some with Type 2) accomplishes this by injecting or infusing insulin. To replicate the pancreas’s slow, steady release of insulin around the clock, basal insulin is used, and to handle the glucose from meals, bolus insulin is taken.
When injecting insulin, a long-acting insulin such as Lantus, Toujeo, Basaglar, or Levemir may be used to serve as basal insulin. When using an insulin pump, a small amount of rapid-acting insulin is infused all the time to provide basal insulin. Whichever method you use, your basal insulin should hold your blood glucose steady when you haven’t eaten or taken a bolus of rapid-acting insulin for several hours. This is usually best accomplished with an insulin pump.
The amount of bolus (mealtime) insulin should be matched to the amount of carbohydrate being consumed, with appropriate adjustment for the premeal blood glucose level, anticipated physical activity, and amount of insulin remaining (if any) from the previous bolus. (If any of these concepts are unfamiliar to you, talk with your child’s physician or certified diabetes educator about learning more.) Again, this can be accomplished through injections of rapid-acting insulin at each meal and snack, but it is far easier and more practical to do with an insulin pump. Today’s insulin pumps have built-in software that can help calculate correct bolus dose sizes, and they can give doses in very small, precise increments.
5. Demand quality from your health-care team
Your physicians and diabetes educators are essentially paid consultants to you and your family. You are ultimately the decision maker when it comes to your child’s daily diabetes care, but every good decision maker relies on the expertise of others to do the best job possible. Your child’s health-care providers should have the knowledge and time to accommodate your needs and interests. For example, they should be comfortable and experienced at using the latest technologies — or at least be willing to learn. They should be accessible when you need them.
If your child’s current health-care providers are falling short in these areas, it may be time to seek consultation elsewhere. But before giving up on your current team, make sure you’re doing your part. You must communicate with them, cooperate with them, provide them with necessary information, and keep yourself informed so that you can ask the right kind of questions.
4. Network your kids
Even if most kids don’t want to participate in a formal support group, meeting and spending time with other kids who have diabetes can have potent effects. When your kids see other kids using devices like pumps and continuous glucose monitors, they’ll develop an interest in them, too. When they see other kids checking their blood glucose level before a soccer game, they’ll be more likely to do it themselves without having to be told. When they see other kids giving their own shots or changing their own infusion sets, they’ll become more comfortable at taking that next step. And psychologically, there is nothing like being around other kids with similar challenges, doing things together, to feel more comfortable in real life.
There is also the opportunity for your child to set an example and teach or show other kids what he has learned and accomplished. This process, called modeling, helps to reinforce the value of appropriate behaviors and provides a sense of pride. So check into diabetes camp for your child. Bring him to local diabetes fund-raisers and educational programs. Check out the Children With Diabetes conferences and online resources at www.childrenwithdiabetes.com.
3. If it’s broke, fix it
Insanity is often defined as doing the same thing repeatedly and expecting different results. Of course, that may seem like the norm when it comes to blood glucose levels! How many times has your child had the same meal, taken the same insulin, and done the same things and had radically different blood glucose results?
Patterns, however, are a different story. If you detect a pattern of out-of-range blood glucose levels, don’t keep doing the same thing. Look for a potential cause, and try doing things a bit differently. Are adjustments needed to accommodate for physical activity? Are carbohydrates being under- or overcounted? Is insulin being given at the right times and into skin that is absorbing it properly?
Insulin requirements can change rapidly in growing kids, so don’t hesitate to adjust doses to meet your child’s changing needs. Don’t forget that the first step in fixing a problem is detecting it, so make sure you’re keeping and analyzing records on a regular basis (see item 7), staying on top of your child’s control (item 10), and utilizing your health-care team for expert advice (item 5).
2. Involve your child
Many kids feel helpless when it comes to their diabetes. They didn’t ask to get it, and they certainly don’t like being told to check, count, calculate, bolus, record, etc., on a daily basis. Whenever possible, involve your child in the goal-setting and decision-making processes. With a young child, it might be as simple as having him choose which finger to prick, or what color pen to use when writing down blood glucose levels. With older kids, it could involve having them set HbA1c or blood glucose targets, or letting them decide how much carbohydrate to have at their meals and snacks. Restoring some sense of control over their own lives is important for establishing “ownership” of their diabetes and avoiding burnout and depression.
1. Let kids be kids
When you have diabetes, numbers are important. But they are not everything. Try not to take the numbers too seriously. You and your child have lives to live! Taking care of diabetes should not be a full-time job, and it should not keep you (or your child) from doing anything you want to do. From sleepovers to sports camps to adventure vacations, there are always ways to adjust so that diabetes can coexist with your chosen lifestyle. In most cases, it is worth sacrificing a few tenths of a point on an HbA1c so that you and your child can enjoy life to the fullest.
One step at a time
Now I realize that these 10 items encompass a lot of stuff. Asking you to implement every one of them right away would be a clear violation of our number-one strategy. Instead, tackle one at a time, starting with the one that seems the easiest. Perhaps you could take the advice in item 2 and ask your child which one he would like to do first! As I tell my clients, the idea is not to do everything perfectly and have perfect control. That’s just not possible. What is possible is improvement. If you can find a way to make things just a little bit better, give yourself (and your child) a pat on the back!
Want to learn more about caring for a child with Type 1 diabetes? Read “Type 1 Diabetes and Sleepovers or Field Trips,” “Writing a Section 504 Plan for Diabetes,” and “Be Aware of Hypoglycemia Unawarness.”