So, what is life like with—and for—a child newly diagnosed with Type 1 (insulin-dependent) diabetes? When I think of everything my 6-year-old son Casey has had to go through in the last half year, I marvel at how well he has adjusted overall. He has moments of anger, frustration, sadness, but for a child who has freedom in eating taken away, needles several times a day, and monitoring equipment inserted onto his body, he is amazing. He even took control over his situation in the first week after diagnosis by learning to count carbs and test his own blood glucose level.
And that is precisely what Type 1 requires—taking control. But how? There are general guidelines and principles but no set recipes to follow because bodies and circumstances differ so much from person to person, even day to day. Blood glucose level normally cycles up and down during the day, so keeping diabetes under control means not letting BG levels go too high or too low. We have learned that getting better control of that rollercoaster requires a lot of trial and error, adjustment of family routines, and calling on the hard-won wisdom of other families with Type 1.
Casey is still our robust, lively boy with a mean pitcher’s arm. It’s just that his pancreas no longer makes enough insulin for his body to use the carbohydrate he eats. Normally, the pancreas automatically produces the amount of insulin the body needs to process the amount of carbohydrate consumed. Since Casey’s metabolism no longer works on autopilot, we need to estimate (and inject) the amount of insulin needed for the amount of carbohydrate he plans to eat—and then adjust that estimate up or down for other influences, some quantifiable (current blood glucose level) and some not (probable physical activity).
There can be no free-range grazing. For example, many children are used to just going to get a snack when they are hungry, but if the snack has more than seven carbs, Casey may not. He would need insulin. Not many foods have seven carbs or less in a single serving. Cheese sticks do so, as we learned, they are a number one go-to for children with diabetes. Casey also likes beef jerky. But how many sticks of cheese and jerky can a person stand after a while?
If Casey is dosed with insulin for dinner and then, one hour later, he wants more food, he ideally needs to either eat something with almost no carbohydrate or wait two more hours before eating again. It is not advisable to eat carbs and just inject more insulin because stacking insulin like that makes it hard to get an accurate blood sugar reading for hours. Three hours is the ideal gap between meals with mealtime insulin dosing.
We faced the problem several times at birthday parties because we didn’t realize that cake would be served an hour after pizza. Casey had to save his cake for later while everyone else ate theirs. Sometimes, Casey tries to negotiate these issues, but ultimately he accepts surprisingly well that he needs to wait. On days like these, we promise him an extra special dessert after dinner. And, of course, now we try to find out what the timing is for food at parties. These are things we never had to think about before.
Eating at restaurants is no longer the care-free spontaneous experience it used to be, but we still enjoy going out. Before leaving the house, we have to make sure we have every vital diabetes item Casey might need—needles, alcohol swabs, insulin, lancets, lancet devices, hand-held glucometer and test strips, his Dexcom receiver, ketone test strips, insulin dosing chart for amount of carbohydrate that will be consumed, glucose tablets or juice to recover from low blood sugar, injectable glucagon should he pass out from low blood sugar and his medical alert bracelet. Keeping track of all these supplies is a monster job, as is refilling them. Most of the items have separate refill dates so it’s easy to fall behind getting refills, as we did once for needles. Some medical equipment also has to go through a durable medical supply company. So, while refilling supplies might sound simple, it can be nerve-wracking. You can’t just skip insulin for a day.
Once we’ve made it to the restaurant, we face other challenges. First, Casey has to decide ahead of time exactly what and how much he is going to eat, and then eat it all within 30 minutes of receiving insulin. Second, nutritional facts are not easily available for the food at most restaurants, unless it’s a fast food restaurant. Without such nutrition facts, we fly blind when we dose Casey for carbohydrate intake. We make educated guesses and Google what we can. One time where the restaurant provided carb counts, we didn’t realize the kid size portion is actually adequate for an adult! We dosed Casey with way too much insulin, and realized that only after he announced he was too full to eat all of the oversized portion. We called his school nurse and she said to offer him dessert. Most kids don’t turn that down and luckily he didn’t either. While no one likes to wait forever for their food, when a restaurant kitchen is behind with serving food, now we start to get nervous and explain to them we can’t wait or Casey’s blood sugar will drop. After several such experiences, we now try not to dose him until the food arrives at the table and we can see the portion size. So, while it’s generally best to dose him 10-15 minutes before he eats so the insulin works in time, it’s too worrisome to do so at restaurants. You learn as you go along.
Physical activity lowers blood sugar so that too can throw off expectations. Six-year-old children don’t sit still, so one could say the majority of their day is spent exercising, especially if they are at camp or in sports. In these settings, we must monitor Casey closely because his blood sugar often drops too low. If it happened in a swimming pool, it could be dangerous. We wouldn’t know, however, because the signal from his Dexcom continuous glucose monitor is lost when he is in the pool. We learned that from another parent.
A few months ago, we went to a birthday party where our friends had a huge water slide and a small blow up pool. I stayed within 20 feet of him to keep the Dexcom transmitter on his body within range of the receiver I carried. Casey engaged in the water activities nonstop for three hours. This was one of the few times when I not only gave him juice boxes for free, but also pizza and cake. That is, I gave him no insulin because his blood sugar stayed safely normal while he was both continuously active and eating in moderation, a balance that would not cause his blood sugar to soar in the absence of insulin. For once, Casey could feel like a normal kid. Happily watching him play, I was thankful there are days when he has the freedom to eat food with no strings attached.
Something else that Casey will realize as he gets older is that a playdate means Mom or Dad must tag along, at least for the next few years. Just going to someone else’s house without one of us is no longer on the table. Leaving Casey in the care of someone who neither has Type 1 diabetes nor is trained to deal with it is not prudent or fair to them.
The same is true for babysitters if my husband Sam and I want to go out. We are fortunate to have capable babysitters who are willing to work closely with us, some with knowledge of Type 1. When we hire a sitter, we usually stay within a five-minute driving radius of our house and we don’t stay away long. Luckily, Casey knows how to manually test his blood sugar so this relieves sitters of that responsibility. Even better, now that we have the Dexcom monitor, the sitter can see his blood sugar level transmitted to his Dexcom and call us with any concerns.
When Casey is old enough to have his own cellphone, we will be able to “follow” his Dexcom readings in real time on our phones while we are out. For now, we try to stay (and keep Casey’s Dexcom receiver) within 20 feet of him. At night, Sam and I take turns sleeping near him so we can hear the receiver’s alarms when his blood sugar goes too high or too low. Before he got the Dexcom, we had to wake up every few hours to test him manually.
Two necessities, new technology and insurance, make diabetes management harder than it needs to be. From day one, insurance has presented headaches. Companies either deny pediatric equipment that would make life easier and safer for Casey or make you jump through hoops to get it. There have been moments when I’ve broken down in tears wondering why a life saving device or medicine is such a struggle to get for a child. Hence, I am and will always be an advocate for children and adults with Type 1 diabetes. It should not be so hard to get something you need daily to avoid health emergencies.
The new technologies for home management of diabetes are wonderful but they come with their own challenges. Continuous glucose monitors such as the Dexcom function on Bluetooth, so its hand-held receiver loses its signal if more than 20 feet from the transmitter attached to Casey’s body. The signal is also lost when Casey is in a pool, because water interferes with transmission. Regaining the signal can take up to 30 minutes. Because Casey is only 6 years old, he is not yet able to carry around a receiver without leaving it somewhere, and he won’t wear a fanny pack to keep it on his person. On several occasions, to our distress, his receiver got lost. After a few such incidents, we put what is called a Tile on it so we can find it. I just tap my phone’s Tile app, listen for the tile to ring, and then follow its sound to the receiver’s location.
I’m incredibly proud of my son. I don’t know that I would handle as well what he is handling at his young age. Much of what he does in managing this disease is on his own initiative. From his first week of diagnosis, he has taught himself how to manage aspects of the routine. He has begun to recognize and tell us when his blood glucose level is low. He accepts when he can’t have certain foods at certain times or needs to wait longer than others to eat again. He eats a lot of cheese sticks and for now doesn’t seem to mind how monotonous that must be. These actions give him a sense of control over a condition that often seems so uncontrollable. Importantly, he continues to do every activity that kids without diabetes do.
While diabetes is challenging for his father and me, we realize that it’s harder on him to live it. Our job is not only to keep him healthy, but to teach him, understand him, and continue bringing joy into his life; that is, to keep helping him to be a young boy despite diabetes. Like Casey, we are learning. We are adapting. We are overcoming. We are still having fun. We are advocating. We are doing our best. And we are the proud parents of a diabetic warrior. We make sure we let him know that.
Lisa Seitles
Hammonton
Lisa and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.