We used to receive a call every week asking if we held support groups for kids with diabetes. Honestly, I 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? Finally, I caved and decided to start a kids’ diabetes support group.
It was an epic failure and a rousing success all wrapped up on one.
The kids were miserable. They varied in age from 4 to 14, which may have accounted for some of the struggles in getting them focused. As much as we tried to engage them in fun social activities, the younger ones were too hyperactive to hold still, and the older ones were too caught up in the “this is stupid – I’d rather be on Facebook” thing. About the only time they would look up would be 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. I could hear them laughing and carrying on. There were snippets of conversation that 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 start a Parents of Kids With Diabetes support group. 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 after age 18.) But I also learned that having diabetes is very different from parenting a child with diabetes. For example, when my sugar is high or low, I deal with it and move on. But when your child 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 recently-diagnosed family. From that discussion (and with a bit of refinement on my part), we developed our own “Top 10” list of techniques for managing blood sugar in kids. (If you’re an adult with type-1, most of the same principles apply.) Anyway, it goes something like this:
10. Persistence Pays.
Parenting is a never-ending challenge. And so is diabetes care. Stay involved in your child’s management even when he/she grows to the point that they can perform many of the daily self-management rituals on their own. Your involvement keeps them accountable and on their toes. That’s not to say that you can never take a break. Ask someone else to help handle your tasks/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 them out of immediate danger: taking insulin and checking blood sugar at least a few times each day.
9. Build structure.
In Fiddler on the Roof, the main character Tevya poses the question during the title song (“Tradition”), ‘Why do our people keep all these traditions?’ His answer: It helps us keep our balance. Likewise, maintaining routines in our daily living helps us to keep our blood sugar in balance. Which can be a challenge, because we all know about the odd appetites, habits, and assortment of activities that pervade kids’ lives. But the fact remains that kids thrive in a structured environment. Look for ways to have meals at consistent times. Play or exercise at regular intervals. Go to sleep and wake up at about the same times each day. Check blood sugars, take insulin, change pump infusion sets, and so on… on a schedule. The more consistent their daily lives, the more consistent and predictable the blood sugars will be.
8. Support year-round exercise.
This deserves special attention because of the tremendous influence physical activity has on blood sugar regulation. Too often, kids get involved in sports or “play” type 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, and sleep their way through the winter and spring. This causes erratic activity pattern causes major changes in insulin sensitivity – how well the body’s cells utilize insulin to lower blood sugar. As mentioned in item 9 above, consistency counts. And that goes for physical activity as well. Encourage and support your child to stay physically active on a regular basis, year-round. And remember, if all else fails, there is nothing more effective than leading by example!
7. Keep records.
They can be annoying and time-consuming, but there is nothing like written record keeping to achieve and maintain quality blood sugar control. Sure, meters, pumps and CGM systems are downloadable. 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 us 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 sugars, but they can also include factors that affect blood sugars, such as insulin, carbohydrates and physical activities. Many people find that blood-sugar-only records work fine until a problem is detected. Then, the more detailed records allow for effective troubleshooting. A series of logsheets can be found at my website: http://www.integrateddiabetes.com/logs.shtml
6. Think Like a Pancreas.
This is purely a nuts & bolts recommendation (and the title of my first book, in case you’re wondering). Your insulin program should match your needs as closely as possible. This is how we achieve blood sugars that are as close to target as possible, minimizing both the highs and the lows. For starters, your basal insulin should hold your blood sugar steady when you haven’t eaten or taken rapid-acting insulin for several hours. This may be accomplished with a long-acting insulin such as Lantus or Levemir, but it is usually best accomplished with an insulin pump. The amount of bolus (mealtime rapid-acting) insulin should be matched to the amount of carbohydrate being consumed, with appropriate adjustment for the pre-meal blood sugar level, anticipated physical activity, and amount of insulin remaining (if any) from the previous bolus. Again, this can be accomplished through injections of rapid-acting insulin at each meal/snack, but is far easier and more practical with an insulin pump.
5. Demand quality from your healthcare 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 daily diabetes care, but every good decision maker relies on the expertise of others to do the best job possible. Your relationship with your healthcare team should be collaborative, not antagonistic or one-directional. Are your healthcare providers comfortable and experienced at utilizing the latest technologies? Are they accessible when you need them? Are they accommodating to your needs and interests? If not, it may be time to seek consulting elsewhere. But before giving up on your healthcare providers, 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.
Hooking your kids up with other kids who have diabetes can have potent effects. When they see other kids using devices like pumps and continuous glucose monitors, they’ll develop an interest. When they see other kids checking their blood sugar 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/show other kids what they have learned and accomplished. This process, called “modeling,” helps to reinforce its value and provides a sense of pride. So check into diabetes camp for your child. Bring them to local fundraisers 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 sugars! How many timesyou’re your child had the same meal, taken the same insulin, done the same things and had radically different blood sugar results? But patterns are a different story. If you detect a pattern of out-of-range blood sugars, 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 carbs being under- or over-counted? 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 adjust doses to meet their changing needs. Don’t forget that the first step in fixing a problem is detecting it, so make sure you’re keeping/analyzing records on a regular basis (see item 7), staying on top of your child’s control (item 10), and utilizing your healthcare 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 them choose which finger to prick, or what color to use when writing down blood sugars. With older kids, it could involve having them setting A1c or blood sugar targets, or letting them decide how much carb to have at their meals and snacks. Restoring some sense of control over their own lives is important for building commitment on their part 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 A1c so that you and your child can enjoy life to the fullest.
Now I realise that these ten items encompass a lot of stuff. Asking you to implement every one of them right away would be a clear violation of our #1 strategy. Instead, tackle one at a time, starting with the one that seems the easiest. Perhaps you could take the advice in strategy # 2, and ask your child which one he/she 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!
Gary Scheiner is owner and clinical director of Integrated Diabetes Services (www.integrateddiabetes.com), a private practice near Philadelphia, USA, specializing in intensive insulin therapy for children and adults. Gary Scheiner is a Certified Diabetes Educator with a private practice (Integrated Diabetes Services) based near Philadelphia, USA. Gary has had type-1 diabetes for more than 25 years, and is author of several books including “Think Like A Pancreas: A Practical Guide to Managing Diabetes With Insulin”. He and his staff of diabetes educators provide diabetes management consultations throughout the world via phone and the internet. Gary recently surpassed his 28-year “anniversary” with diabetes.
Note: He and his team of clinical experts (all of whom have diabetes) offer diabetes management consultations via phone and internet to insulin-users throughout the world. For more information, call (877) 735-3648 or e-mail firstname.lastname@example.org.