On pens and needles: dealing with diabetes

“This isn’t very pleasant, but I imagine you’ll get used to it. You’ll be doing this yourself, four or five times a day.”

The emergency room nurse takes a finger-stick blood sugar reading from my 13-year-old. He’s already had an IV insertion and blood sample taken, and been either too brave or too sick to react, but he jumps at the glucometer’s prick.

I realize right away she’s talking about diabetes — it’s been in my mind, after all, since the middle of the night, and it’s now mid-morning. I wonder what Aaron makes of her comment, and feel a flare of anger. Is this how you tell a kid he has a lifelong disease, with an off-hand comment while you punch a hole in his skin?

He gets it, all right. He lies back on the gurney, too exhausted to really cry, with tears leaking down the sides of his face. If only I could kick him out of the bed, lie down in his place, hook the IV into my own hand. He’s just a kid, eager to try his teenage wings. He shouldn’t have to deal with this.

Everything has happened too fast. With something this serious, you imagine a series of tests, a solemn consultation in a doctor’s office. Instead, with a single blood sugar reading, everyone in emerg knows what’s up.

Up until last night, we thought Aaron had a simple ear infection and a sore throat. But then he got up to pee three times in three hours. By dawn, he was vomiting and the skin was drawn over his cheekbones and smudged under his eyes. And he was tired — really, really tired. I have never seen a kid so wiped.

The doctor who comes to see us has launched into a reassuring talk about advances in treatment and the flexibility today’s kids have with their diets. I have to interrupt him to ask, “Is this diagnosis certain?” Nobody has actually said, in plain words, “Your son has diabetes.”

He smiles apologetically. I suppose it is so obvious to the staff that they all assume we’ve been told.

“I’d like to be able to say no,” he says. “But, yeah, it’s for sure.”
For the next 24 hours, adrenalin and anxiety make everything surreal. My head buzzes like a bad fluorescent light. It’s hard to focus my eyes on the handouts we are given — and when I do, each new bit of information (like the drawing of a kid’s body chopped into tiny little squares, each a good spot for injecting insulin, thousands and thousands of needles over a lifetime) seems to make me cry.

There are bright spots — and the brightest is how fast Aaron feels better. By late morning, he’s sitting up in bed, the colour back in his cheeks. At dinnertime, they wheel in enough food for a linebacker. I look at the mounds of potatoes and frozen peas, two slabs of roast pork with gravy and milk and buns, and my heart sinks. Aaron doesn’t like milk or frozen peas, and to a sick kid the sheer quantity must be nauseating. Am I wrong. He tucks in like a starving man — which is, in fact, pretty much what he is. (Without insulin to process the carbohydrates, the body can use only fat and protein.) I watch him shovel in peas and chase them with two cartons of milk and marvel. “New diabetics are usually pretty hungry,” observes our doctor.

Aaron’s older cousin phones him that evening. It turns out her boyfriend, Jameson, has diabetes, and she regales Aaron with stories of the “bad” things he eats and the day he didn’t realize his blood sugar was too low until his handwriting went all shaky. She laughs about how funny it looked. He hangs up feeling a lot less fragile. “Keegan’s phone call was great,” he remembers. “To be able to joke around about it, it made me feel more normal.”

The next day, Jameson arrives. He’s had diabetes since he was four, and his visit goes a long way to answering the scary question mark that is the future. More than any nurse or social worker could, Jameson reassures Aaron that he still has a life. He will go on school trips, have sleepovers with his friends, play sports and eat chips. I could kiss him.

At bedtime that night, I look over from my little parent cot and see Aaron lying on his back with the headphones on, listening to the comedy CD his cousins have sent him. He is grinning at the ceiling. Only yesterday, he was the teary child on the emergency room gurney. He’s come a long way since then — I’ve almost been able to see his brain working overtime to get on top of what has happened. I’m so proud of him, the feeling approaches awe.

Aaron remembers it being almost like a checklist. “At first it was all too much. Then I just started going, OK, I can do the sugar checks. I can do a needle. It’s not so bad…piece by piece, I figured out how to do it.”

Aaron, admitted on a Wednesday, goes home Friday morning and, although he is glad to be sprung, I’m finding it a bit scary. We’ve had a visit from the team from the local paediatric diabetes clinic, and Aaron has been given his own glucometer (much kinder than the hospital-grade one) and insulin pens (special injection devices, easier to manage than syringes). “You don’t have to learn everything at once,” they assure us. “You won’t break him.” We have each — Aaron, myself and my husband, John — given a grand total of one injection. Thank God for the pager number that will get us help anytime we need it.
In the weeks to come, we take a crash course on the complex disease that is diabetes. We learn how to deal with a “low” — a passing inconvenience if caught early, a scary medical emergency if unrecognized — and stock up on sugary snacks for Aaron to carry at all times. Before Aaron returns to school, John lets the kids in Aaron’s class know what’s up, and we meet with his teachers, who are uniformly wonderful. (“I could get away with anything now,” Aaron grins.) We see his blood glucose levels gradually come down, then go down too far, then come up a bit too high, and finally stabilize. Three months later, they go wacky again, and we are into another round of bit-by-bit dose adjustments.

So many things that were normal parts of Aaron’s life seem like huge hurdles at first. But he pushes us, and he jumps them one after another: first dinner at a friend’s. First restaurant meal. First (gulp) sleepover party (when do you take your bedtime insulin if bedtime is 3 a.m.?). Evening music performances that require eating dinner in the afternoon. The first time he performs with his band in front of a big crowd, I can’t shake the spectre of him going low on stage, maybe not noticing because he’s too focused on his music. But he tests himself before he goes on, he has glucose in his pocket, and it’s fine.

One bonus is his openness about his diabetes. I hear of kids who won’t let even their close friends know, and I wonder at the stress they must endure, sneaking injections in the washroom. The first time Aaron gave himself an injection at school, a crowd of classmates clustered around to watch. “My teacher was going, ‘Give the guy some privacy,’ but I said I didn’t care,” he says. “I would have been curious too. Now they know what it’s like and it’s no big deal.” Restaurants, ski chalets, the lobby of the Stratford theatre — no venue is too daunting. I suspect there’s a bit of a political statement behind his nonchalance: If I can deal with doing this, other people will just have to deal with seeing it. Right on.

Still, it’s a big load for a kid. At an age when freedom beckons, Aaron is tied to his monitor, his pens and his diet — albeit a diet that requires much less self-denial than we expected. He gives himself five injections a day, and tests his blood glucose at least that many times. He doesn’t leave the house without packing along his stuff. The simplest pleasures — an extra snack at the movie theatre, a weekend at a friend’s — need to be factored into his treatment.
It’s hard to know how much to supervise, how much to let him take charge. He’s high at his bedtime snack, so decides to take a correction dose of insulin. “How much are you taking?” I ask, worried he’s overdoing it. Going low in your sleep is not a good thing. “One and a half,” he replies, impatient with my interference. “Don’t worry, I figured it out right.” Still I can’t help venturing, “Maybe you should just do one, not push it.” “No, because I’m having extra to eat.” He’s right. He usually is.

But like all 13-year-olds, he can be forgetful, impulsive or plain stubborn. We have a little standoff as he heads out to a tobogganing party: I want him to pack an extra snack, in case they’re at it all afternoon. “It’s not like being at someone’s house, where you can just ask for some crackers.” “I don’t need them,” he yells over his shoulder, and runs out the door. I’m mad, and worried, until I notice how bloody cold it is. They won’t be out there long, after all.

Then there are the other questions, the ones that are really about a young teen pushing to grow up faster than his parents would like. He and three friends announce they are going to an “all ages show” at a bar called the Trasheteria. The name pretty much says it all. Am I against it because it really isn’t an appropriate venue for a kid his age? Yes, I think so, but under it all is the part I don’t confess to (though Aaron, reading this story, mutters, “Ha! I knew it”) — the thought of him passed out from low blood sugar on a dark, noisy, dance floor full of half-drunk young adults, and nobody taking any notice. Would his friends be able to get help in time? I’m in the middle of this little fantasy when the phone rings. It’s one of the other mothers. “What is this place?” she asks. “Isn’t it a bar? I’m not comfortable with that.” I’m relieved it’s not just me.

The teen years are tough enough. Add in a chronic disease and, for some kids, it is one stress too many. Right now, Aaron is conscientious about his treatment. Some teenagers aren’t. Those who have had diabetes since childhood get bloody sick of it all; they may rebel against the constant discipline the way you’d rebel against an overcontrolling parent: To hell with it, I’m just not going to bother anymore. Teens new to the disease may be embarrassed and resentful; they don’t want to be different, to feel vulnerable. Either reaction can lead to missed tests, missed insulin doses, hospitalizations. And most teens experiment at least a little with risky behaviour — but getting drunk with your friends is a different level of risk altogether if you have diabetes. Aaron has already had one “drinking talk” from our team: “I hope you won’t, and I hope if you do you will talk to your parents, but if you are going to drink, you have to talk to one of us first.” (The teen boozefest is something parents of diabetic kids don’t like to think about because alcohol can make a diabetic’s blood sugar plummet, and people with very low blood sugar tend to act kind of drunk. So the kid doesn’t realize he’s low because he’s drunk, and his friends don’t realize because they’re drunk. And when he passes out, everyone thinks he’s, you know, passed out. Even if someone calls the paramedics, precious time could be wasted treating for alcohol poisoning when the most urgent need is glucose.) I have a lot of faith in Aaron’s intelligence, but I also have two older boys and I know that his common sense will be tested in the years to come.

But we don’t think too much about that now, just as we try not to think about the scary complications associated with this disease. Our team has told us that, because of improved treatment, today’s kids should have better long-term health than past generations did, and I choose to believe that. I focus on Aaron right now: a kid in a Led Zeppelin T-shirt who plays a mean jazz piano, enjoys playing basketball and hanging out with his friends, and looks forward to starting high school. He takes care of his diabetes, but he doesn’t let it get in his way. And that’s just how we want to keep it.
Diabetes is a disease of insulin deficiency. Insulin is necessary to make the sugar released from the digestion of carbohydrates available to the cells. Without it, sugar builds up in the blood. If there is no insulin in the body at all, critically high blood sugar levels ensue quickly, acids build up in the blood and, without treatment with insulin, coma and eventually death result. Over the long term, chronically elevated blood sugar levels can cause damage to various organ systems. While injected insulin can control the disease, there is no cure. Diabetes affects some two million people in Canada.

There are two types of diabetes affecting children.

TYPE 1 DIABETES is an autoimmune disease, in which the body destroys the insulin-producing cells of the pancreas. People with type 1 diabetes produce no insulin at all and require regular doses of insulin (via syringe, pen or infusion pump) to survive.

Although type 1 accounts for only 10 percent of diabetes cases, over 90 percent of children with diabetes have type 1. Canada has the third highest rate of type 1 diabetes in children 14 years or younger in the world (3.9 per 1,000*), and rates are rising by three to five percent per year.**

TYPE 2 DIABETES results when the body either produces insufficient insulin or doesn’t utilize it effectively. In the past, this was almost exclusively a disease with middle-age onset, but there has been a disturbing increase in children and teens being diagnosed. Obesity and lack of exercise increase the risk for type 2 diabetes.

WARNING SIGNS Most people know the classic symptoms of diabetes: constant thirst, unusual hunger, frequent urination, weight loss, fatigue. If you notice any of these early warning signs in your child, you should take her to the doctor and ask for a blood sugar or urine glucose test. Remember, these may not be as clear-cut as they sound. Often a virus or other illness coincides with diabetes onset and masks its symptoms — the child may have been living with reduced insulin capacity for some time, but the stress of an illness seems to push it over the edge. Kids in a growth spurt often get quite thin, so they may not be identified as losing weight. And if the diabetes kicks in over a hot summer, increased thirst may seem normal.

Children may not be diagnosed until their blood sugar has risen to dangerous levels and they are clearly very sick. At this stage, there may be vomiting, extreme lethargy and the characteristic smell of ketones on the breath, variously described as “fruity,” “boozy” or “like nail polish remover.” (Ketones are a toxic by-product.) This cluster of symptoms should signal an immediate trip to the ER.

*Type 1 Diabetes (3rd edition) by Ragnar Hanas
**Type 1 Diabetes Facts, Juvenile Diabetes Research Foundation
(Special thanks to Marcia Franks of Toronto’s SickKids diabetes team, and the Peterborough Paediatric Diabetes Clinic)