MICHAEL GRANBERRY / The Dallas Morning News | Posted: Monday, March 12, 2007 7:00 pm
DALLAS — Jasmine Amerasekera is a super-cute 10-year-old kid. She loves to paint, act and play tennis. But Jasmine is different from most kids.
She has diabetes.
She received the diagnosis eight years ago, just before her third birthday. Life changed radically overnight for her and her parents, who live in Dallas. Jasmine is their only child.
From the moment a croupy cough and virus unveiled the onset of type 1 diabetes, Jasmine has had to cope with a harsher reality than most of her peers.
Even so, she is hardly alone. Diabetes is one of the most common chronic diseases in school-age children. About 176,500 people in the United States younger than 20 have diabetes. About 1 in every 400 to 600 has type 1 diabetes, which afflicts an additional 13,000 children every year, according to the most recent figures from the American Diabetes Association.
For children with diabetes, and for the mothers and fathers who care for them, it’s never an easy road.
“It’s a huge adjustment,” says Anoma Amerasekera, 43, Jasmine’s mom, who had to undergo a crash course in how to care for a diabetic child.
For a big part of coping with juvenile diabetes is simply grasping the fact that your child has it. Ms. Amerasekera was surprised, even astonished, by Jasmine’s diagnosis, since no immediate family members had ever been diabetic.
On a night shortly before her third birthday, Jasmine’s cough and cold were soon followed by lethargy, frequent urination and extreme thirst. Once she arrived at the hospital, tests showed she was severely dehydrated, with a soaring blood sugar level.
Amerasekera soon began giving her daughter a minimum of three injections a day and pricking her finger for blood as many as eight times a day, to check her blood sugar. That way, she could determine how much insulin she needed to inject.
And that, she says, was the easy part. The harder task was “the food part,” forcing her to become a nutritional genie almost overnight, measuring every morsel of food her daughter consumed, to determine carbohydrate content and the necessary dosage of insulin.
She would inject her daughter in the arm, the buttocks and the thigh. She used two different types of insulin, one fast-acting, the other covering the whole day.
“Obviously, I didn’t like giving the shots,” says Ms. Amerasekera, “but you have to do it. You don’t have a choice. She was obviously very upset. All she knew was that these two people who loved her were giving her shots.”
But the nutritional balancing act was far more vexing and time-consuming.
“It wasn’t that she couldn’t eat most things,” her mother says. “It was that she had to eat certain amounts at certain times. You would give her a shot based on the amount you thought she’d be eating 20 minutes later. So, 20 minutes would come around and she might say, ‘I’m not hungry.’
“That didn’t work, because you had already based the amount of insulin she needed on the food she was supposed to eat. You simply had no choice. She had to eat what was put in front of her. For a child so young, that was almost impossible to understand.”
Shannon Penn, 35, of Wylie, Texas, now finds herself coping with the same routine. She’s the mother of 21-month-old Samuel Penn, recently given a diagnosis of type 1 diabetes. Sam’s father, Deck Penn, 33, knows the drill. He and his brother have been diabetic since childhood.
Although type 1 diabetes can strike anytime between infancy and age 30, “you don’t typically hear of that many kids being diagnosed as young as Sam,” says Ms. Penn, also the mother of 5-year-old Joseph, who does not have diabetes.
“It’s been very difficult having it happen to a baby,” says Ms. Penn. “You can’t explain things to them. You can’t explain to him why he’s frustrated when he wants to eat something … right then and there, and he just can’t have it right then and there.”
Sam gets his first injection at breakfast. He then has a midmorning snack that requires his mom to carefully count carbohydrates and prick his finger for blood.
“If his blood sugar is high at lunch,” she says, “I have to give him another shot.”
She checks him again in the afternoon. He usually has three shots a day, unless his blood sugar is high at lunch; then he has four. He usually undergoes six to eight finger sticks a day to determine blood sugar.
It agonizes his mom to have to stick him that many times, but Sam, she says, has been surprisingly good.
Ms. Penn checks Sam at 11 p.m. and — this is the tough part — in the middle of the night. She and her husband alternate the 3 a.m. routine, which is never easy. Having to draw blood from a sleeping child is one thing, but Mom in particular finds it hard to fall asleep once she’s awake.
The Penns recently learned that they are expecting their third boy in March.
“My concern about the new baby would be the same as having my 5-year-old diagnosed with diabetes,” says Ms. Penn, “because lots of things can happen to your kids. We’re happy that this is manageable, and my husband having the disease makes it easier to know what to do.”
Jasmine and her family know a nighttime routine well. In the middle of each night — 2:30 a.m. in their case — one parent awakens to check on Jasmine, pricking her finger to check her blood sugar. If her levels are low, they give her glucose tablets to raise it. If it’s high, they give her insulin. And if all is fine, they go back to bed.
Jasmine is, however, vastly different from Sam in one important respect. Life has been made so much easier by the insulin pump enclosed in a tiny pouch around her waist. It contains a miniature computer, into which she enters data, such as the carbohydrate content of the food she’s about to eat and her most recent blood sugar reading.
For example, on a recent afternoon, she comes home from a round of tennis and wants a snack — an apple and peanut butter. She enters 25 grams into the 2-inch computer — 20 for the apple, 5 for the peanut butter, plus her blood-sugar reading of 89, taken from her finger moments before.
The computer automatically tells the pump how much insulin to inject, and voila! It’s done. She changes the catheter that’s inserted into her body every three days, but it’s so much easier than having to give herself an injection several times a day.
Ms. Amerasekera is a volunteer at Children’s Medical Center Dallas, where she sees all types of people who find themselves confronted with the grim news that they, too, are suddenly the parents of a diabetic child.
“It’s a huge challenge,” she says, “and all parents of newly diagnosed children of type 1 diabetes find it extremely scary. They’re overwhelmed and scared. The frustration comes later. But they all face the same challenges.”
It helps when children have stay-at-home moms. For them, such a term is a cruel misnomer. Taking care of a child with diabetes is the equivalent of a full-time job.
Ms. Amerasekera has spent years educating teachers at her daughter’s school about potential pitfalls, such as midday snacks. When it comes to such things as birthday parties, which usually mean ice cream and cake, her efforts at educating must, by necessity, also extend to other parents.
Such events as sleepovers and campouts also require vigilance on the part of everyone in Jasmine’s circle, including friends as well as their parents.
Jasmine’s father, Ajith Amerasekera, 46, who works at Texas Instruments, says he and his wife have had to become hyper-vigilant in taking care of their daughter, who left the hospital eight years ago today to begin her life as a diabetic child.
But taking care of a diabetic child has forged a bond that might not otherwise be there.
“It’s brought us a lot closer,” says Mr. Amerasekera. “We feel a much deeper connection with Jasmine and her day-to-day life. I wouldn’t wish this on anyone, but if it does happen, you have to make the best of it. You have … no other choice.”
BREAKOUT BOX
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GUIDELINES FOR FAMILIES
First, be alert to the symptoms of diabetes. If one or more of the following present themselves in a child, see a physician as soon as possible: frequent urination, excessive thirst, extreme hunger, unusual weight loss, increased fatigue, irritability or blurry vision.
If a child is diagnosed with diabetes, treatment must begin as soon as possible. Preschoolers are often frightened by finger sticks and insulin shots. But they’re a necessity. It can help for parents to say, “Yes, I know it hurts” and “You’re being very brave.” Stickers and rewards help encourage a child to have a finger stick or shot. Use positive reinforcements rather than scolding or threats of punishment.
Don’t inject too close to moles or scars. Talk to your doctor or a diabetes educator about the best options.
Some tips:
If you inject in the arm, use only the outer back area of the upper arm (where the most fat is). Otherwise, you run the risk of injecting into a muscle (ouch!).
If you inject in the thigh, stick to the top and the outside area. Stay away from the inner thigh; chafing can make the injection site sore.
If you inject in the stomach, don’t do it too near the belly button. The tissue there is tougher and makes the insulin absorption less predictable.
SOURCE: American Diabetes Association