In the United States, 23.6 million people are diagnosed with diabetes, and of that number, more than 186,000 are youth and children. According to the American Diabetes Association (ADA), a new diagnosis occurs nationwide every 20 seconds. In Tennessee, more than 600,000 people, young and old, live with the disease, and those numbers are rising. Here‘s a look at what diabetes is and what it‘s like for your child to live with it.
To read more about the personal experiences of families affected by diabetes, you can visit the blog posts of Heidi Elbarky, Our Lives with Diabetes and a selection from Regge Jones’ blog, Three For Today.
“Taking my blood sugar so many times a day is the hardest thing for me about having diabetes,” says 8-year-old Jesse Jones of Clarksville. Jesse was diagnosed in May of this year with Type 1 diabetes, and his 6-year-old sister, Elizabeth, was diagnosed with Type 1 in July 2009. Elizabeth says the hardest thing for her is re-inserting the infusion set on her insulin pump every three days. Both kids are on pumps attached to their abdomens, and their mother, Regge (who is also diabetic), says both kids prick their own fingers to check their blood sugar at home and in their classroom at school every day.
January 27 of this year is a day I will never forget. It was the day my doctor told me I have Type 2 diabetes. With no knowledge going in, I first felt fear of having to stick myself with a needle every day, losing my eyesight, going into kidney failure and winding up on dialysis or having my legs amputated. Those scary scenarios can and do happen to diabetics, but the good news is those situations are preventable.
For a child diagnosed with diabetes, the management of the disease, of course, first falls on the parents, and educating their kids on how to manage their disease is of utmost importance.
What Diabetes Is
The one thing most people know about diabetes is that it’s a blood glucose (sugar) disease. It is also a disease – that if not managed correctly – will attack the body’s blood vessels. Blood sugar that is too high can attract and manifest infections in the body, and the infections feed on and grow from the elevated sugar content in the bloodstream. When you hear the stories of people going blind or losing a limb due to diabetes, it’s because the blood vessels in those areas are much smaller and if blood sugar isn’t kept under proper control, infections can take over and become threatening.
There are two main kinds of diabetes – Type 1 and Type 2. Managing them is different, but the importance of controlling them are the same.
Type 1 diabetes is formerly known as “juvenile diabetes,” because children are most typically diagnosed with Type 1. According to the Centers for Disease Control, Type 1 constitutes between 5 and 10 percent of the overall diabetic population, but it accounts for the majority of cases in children.
With Type 1, the pancreas doesn’t produce insulin, the hormone necessary to convert sugars (carbohydrates/starches) into the energy needed to exist, primarily where brain function matters. In order to compensate, Type 1 diabetics either have to take a few rounds of insulin injections every day or wear an insulin pump, which is about the size of a deck of cards, attached to the body, administering a steady dose of insulin throughout the day. Type 1 diabetics who use a pump have to change it out every three days to a different location.
The most common type of diabetes is Type 2. In this type, a couple of scenarios can be the culprit: either the pancreas doesn’t produce enough insulin or the body’s cells basically ignore the insulin or don’t absorb and distribute enough of it to maintain healthy blood sugar. The majority of Type 2 diabetics take some form of oral medication which helps the body distribute insulin the pancreas does create and helps to keep blood sugar levels in check. In rare cases, Type 2 patients are able to keep their sugar under control only through healthy eating and vigorous exercise, and there are some who do take insulin on occasion. While Type 1 diabetics can “juice up” (a slang term for administering insulin) a little more to compensate for a glucose reading that’s too high, the only thing Type 2 diabetics can do to bring their high sugar readings down is cardio exercise – walking, jogging, running, biking, aerobics, swimming, etc.
Unfortunately, there is no absolute, sure-fire way to prevent the development of diabetes, particularly with Type 1 in children.
“The bottom line is that there is at present no substantiated intervention that prevents or delays diabetes,” says Daniel Moore, M.D., Ph.D., in the Department of Pediatrics at the Ian Burr Division of Endocrinology and Diabetes at Vanderbilt. Moore says studies show there is increased risk of diabetes in children whose mothers experience gestational diabetes while pregnant.
Genetics play a predominant role in Type 1, as well as Type 2, although for the latter, unhealthy lifestyle habits play a heavier role. In Type 1 cases, there is usually an inherited predisposition to the disease. If Johnny’s mother or father has diabetes, there’s a greater chance he will get it. In the case of kids who develop Type 2, which typically happens in kids during the ‘tween and early teen years, a lot more points toward eating and activity habits.
“In Type 2, obesity and inactivity are stronger factors, especially within the last 20 years,” says Moore, noting that Type 2 can be preventable or at least delayable if healthy eating habits and exercise are part of a child’s daily life. Sedentary kids who eat a lot of sugary filled junk food are more likely to wind up with Type 2 diabetes at some point in life.
Living with Diabetes
No matter what type your child is, one thing is common: The necessity of pricking a finger with a spring-loaded lancet device to draw a drop of blood needed to conduct glucose readings. I prick mine four times a day: first thing in the morning before breakfast, before and after exercise, and a couple hours after dinner. Anytime I feel strange or light headed, I’ll check then, too, to see if something is amiss with my blood sugar. Blood sugar that drops too low can be extremely dangerous.
Type 1 diabetics have to check several times a day: in the morning before breakfast (after the nighttime fast), before and after each meal and before bedtime. And if there’s physical activity in the mix, then again before that takes place (it is important to know how many carbs to intake prior to any form of exercise in order to keep levels in range as physical activity reduces blood sugar).
Healthy eating is a critical component of controlling either type of diabetes. Carbs are necessary, of course, to fuel the body and brain, but consume too many of them, and they become the enemy buy boosting blood sugar too high and causing weight gain. And being diabetic doesn’t mean a child can’t have a cookie or enjoy a small piece of cake once in a while, but the extra carbs have to be counted into that day’s allotment, which is different for every person depending on age, weight, etc.
“We don’t restrict any foods from the kids, but we don’t let them overdo it, either,” says Jones, adding that they don’t keep a lot of junk food in the house, but if the children want something special on occasions, it’s better to let them have it than to be completely restrictive.
“Carbs are carbs are carbs,” says Spring Hill mom Heidi Elbarky, who is Type 1 and whose 5-year-old son, Omar, is also. “If we’re at the grocery store and Omar wants a cookie, he can have it, but he knows it has to be deducted from what’s left of his carb budget for the rest of the day.”
Little Omar checks his own blood sugar, but instead of being on a pump, he takes shots. His parents administer them (at school it is the nurse who gives them) and rotate locations between his arms, legs and backside to reduce the build up of scar tissue. The shots take place after meals, and it’s important to count carb intake when eating to know how much insulin is necessary.
“We have to administer a half unit of insulin for every 15 grams of carbs,” says Elbarky. And it doesn’t take a lot to constitute 15 grams. A small, four-ounce banana equals 15 grams, as does one slice of wheat bread and one-third cup of cooked rice or pasta.
Every three months, diabetics see the doctor for a series of blood and urine tests to make sure everything’s OK. The A1C test is part of this, which provides an accurate reading of average glucose levels over a three-month period. For most diabetics, the target A1C reading is six or less.
The Positive Approach
For both moms, the power of positive thinking is vitally important for them and for their kids.
“It’s important to me for Omar to feel like nothing is wrong with him,” says Elbarky. “I think he’s capable of everything, and I don’t think having diabetes should hold him back, even though he knows he has to do things a little bit differently.”
“There are a lot of misconceptions about diabetes,” says Jones. “A lot of people think it’s a fat person’s disease, but both of my kids are skinny. My children are not going to grow up with missing limbs, because they are learning how to manage themselves.” The siblings will be the 2011 child ambassadors for the local ADA’s Tour de Cure ride next May.
While living with diabetes at any age means doing things differently and paying strict attention to everything you consume, there is nothing about it that should cause someone to be limited in any way. Since my diagnosis, I’ve become a lot more active, eat healthier than I ever have in my life, have dropped 46 pounds, and it’s rare these days if my blood sugar is out of the range I’m supposed to be in, between 70 – 120.
Elbarky has had diabetes since she was 9, and says the thing she hated most of all back then was hearing about leg amputations. “I don’t see any reason for that if you take care of yourself,” she says. “You need to have the right resources, good doctors and the appropriate tools so you control it, not it controlling you.”
Chad Young is managing editor for this publication. His last A1C was 5.4.
know the signs
The symptoms of Type 1 and Type 2 diabetes can gradually surface or they may occur suddenly. If your child exhibits any of the following, call your pediatrician immediately:
- Extreme thirst
- Frequent urination
- Drowsiness, lethargy
- Sugar in urine
- Sudden vision changes
- Increased appetite
- Sudden weight loss
- Fruity, wine-like odor on breath
- Heavy, labored breathing
- Stupor, unconsciousness