THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Monday, February 20, 1995 TAG: 9502180040
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: By DEBRA GORDON, STAFF WRITER
LENGTH: Long : 163 lines
YOU SEE IT in her toes.
Hard and calloused, dotted with dozens of pinpricks, they bear testimony to 4-year-old Lindsey Sutherland's disease like nothing else.
For it's from her toes that Lindsey's mother collects a drop of blood at least four times a day, puts it on a chemically treated strip of paper and watches for the magic number to pop up on a hand-held machine, called a glucose meter.
40. 366. 433.
Too low, and Maggie Sutherland is dumping sugar into a Coke and pouring it down her daughter's throat. Too high, and she's readying a syringe for another ``boo-boo,'' a life-giving dose of insulin.
Lindsey, like 123,000 other children and adolescents, has Type 1 diabetes, often called juvenile diabetes. In the more common Type II diabetes, the body doesn't properly use insulin, the hormone that helps cells convert glucose to energy. In Type I, the body doesn't produce any insulin.
Most children develop the disease between ages 4 and early adolescence. But doctors diagnosed Lindsey when she was only 13 months.
It was a diagnosis that would create a mature-beyond-her-years little girl. One who, at 4, politely turns down lollipops and candy. Who can tell the difference between a Diet Coke and a regular one. Who would rather get her insulin shot than have her hair washed.
Recently, Maggie and her husband, Jon, sat down with Lindsey and explained that she would probably always have diabetes.
``But, Mom,'' she said. ``If I didn't have diabetes, then could I have Honey Nut Cheerios?''
It nearly broke Maggie's heart. ``She's so innocent and I feel so bad for her because these things are so important to her.''
One, two, three!'' Balancing Lindsey against her hip, Maggie reaches over with the other hand, pulls down her daughter's tights and underwear, snatches the loaded insulin syringe from behind her ear and plunges it into her daughter's buttock.
``High five!'' she says.
And the two slap their palms together.
It's a ritual repeated at least six times a day in the Sutherland house. For Lindsey isn't the only one here with diabetes. Maggie has it, too.
During her first pregnancy, doctors told 25-year-old Maggie Sutherland that she had gestational diabetes. It's a common complication during pregnancy, which, if untreated, can result in the baby growing dangerously big.
That, however, was never a problem for Maggie. Seven months into the pregnancy, she delivered a boy. He lived three days.
It was a tragedy that would put into perspective everything to follow. Once you've lost a baby, Maggie says, nothing else is quite as bad.
Three months later, Maggie began showing classic signs of diabetes - frequent urination, weight loss, blurred vision. Her first thought after diagnosis was for the safety of the other children she hoped to have. What was the risk that she'd pass on the disease?
Very slim, came the answer.
When Lindsey was born on July 4, 1990, she was perfect. No sign of diabetes.
Because of Maggie's diabetes, the Sutherlands rarely kept candy or other sweets around. But on Lindsey's first birthday, they presented her with a cake decorated with pink sugar roses.
A week later, Maggie was rushing her nearly comatose daughter to the pediatrician's office, unsure why Lindsey was sleeping too much, couldn't hold her head up and was wetting her diapers through at night.
The pediatrician knew what was wrong as soon as he smelled Lindsey's fruity breath. Her body, deprived of the insulin to break down glucose into energy, was borrowing from fat stores, which the body releases as a poisonous chemical called ketones.
He assumed Maggie knew, too, given her own diabetes. So he told her to get Lindsey to the hospital, without telling her his diagnosis.
At the hospital, the doctors gently sat the Sutherlands down.
``Your daughter has diabetes.''
Maggie and Jon looked at each other and started laughing. Diabetes? Diabetes they could handle. Maggie had diabetes. What was one more dose of insulin?
They would soon find out.
The key word in managing diabetes is control. Control your diet. Control your exercise. Control your insulin. Your blood glucose. Your emotions. Everything - even a cold - can send that all-important number on the glucose meter swinging wildly.
But just try to control anything with a 2-year-old, let alone something that involves needles and finger sticks, and see how far you get.
``The younger the child, the more challenging they are, because they are unpredictable,'' says pediatric endocrinologist Dr. Reuben Rohn of Children's Hospital of the King's Daughters.
``They do their own thing, and one has to react to the way they are, rather than trying to teach them to be the way you want them to be.''
This means, for instance, that instead of taking her insulin before meals, as Maggie does, Lindsey receives her injections after she eats, so it can be regulated depending on what and how much she eats.
It means that instead of orange juice in the morning (which would send her blood sugar skyrocketing), Lindsey has, since she was 2, sipped a cup of coffee with her parents.
What makes Lindsey's diabetes even more difficult to regulate is that, as in other children who develop it as young as she, it is unpredictable. And everything throws it off.
When she was 18 months old, she had asthma attacks so serious she landed in the hospital every month for six months. The stress of the attacks, coupled with the asthma medication, played havoc with her blood levels.
But the greatest threat to a child as young as Lindsey is not her blood sugar getting too high, although that is dangerous, but it getting too low.
Too low too often, and it can cause brain damage. Already, Lindsey has had several hypoglycemic seizures when her blood sugar was too low, one serious enough to require CPR, another that left her speech slurred for several hours.
For that reason, she sleeps in her parents' bed, so if she has a seizure, they'll feel it and wake up.
It's a level of protectiveness the Sutherlands know they'll have to give up soon. Even now, it's a struggle not to let Lindsey's diabetes control their lives, too.
Says Maggie: ``Every time the phone rings at work, or I come back from lunch and my message light is lit, I'm terrified that something has happened.''
The glue that holds the Sutherlands lives together is, at this moment on a bright Tuesday morning, sitting cross-legged on the carpet building a tower of plastic blocks with five preschoolers.
Jerri Breslin, 52, is not only Lindsey and her 18-month-old brother Spencer's day care provider, she is Lindsey's godmother and a surrogate parent to Maggie and Jon.
She's been caring for Lindsey since the little girl was 6 weeks old. When the diabetes was diagnosed, Breslin, who knew nothing about the disease, began reading up on it. It never occurred to her to stop caring for Lindsey, to think that the risk of Lindsey going into diabetic shock was too great.
What scares Breslin is how quickly Lindsey's lows occur. From a high of 200 to a low of 40 within 15 minutes. Rarely does she stay at normal levels - about 150 - for very long.
Whenever Lindsey looks sleepy, Breslin is there pricking her toe. Once, when Lindsey and her friend Allison were lying quietly on the couch watching a movie, Breslin, alarmed, checked Lindsey's sugar. Normal. An hour later, when the two girls still hadn't moved, she checked again. Still normal. And that's when she noticed that Allison was burning up with fever.
``I'm so used to worrying about Lindsey, I didn't even think to check Allison,'' she said.
It's a common problem when parents or caregivers have a child with diabetes. And one Maggie and Jon worry about with their son, Spencer.
They also worry that he'll develop diabetes.
But diabetes, although a genetically inherited disease, doesn't work the way blue eyes or other genetic traits do, said Rohn.
``Theoretically, if a parent has a child with diabetes, then they both carry the gene for it and one in four of their children should get it. But in actuality, the incidence is far less,'' he said.
And that makes scientists and doctors think that environmental or other factors must also be at work. Because even identical twins have only a 50 percent chance of developing the disease if one twin has it.
One national study, in which Maggie hopes to eventually enroll Spencer, is following diabetics' relatives, testing them for early signs of the disease, and then dosing them with insulin in a kind of preventive vaccination. The theory is that it will modify the body's immune response and prevent the person from getting diabetes.
Some day, Maggie hopes, there will be a cure. And when the diabetes is gone, she's promised Lindsey an entire box of her favorite, forbidden treat.
Honey Nut Cheerios. ILLUSTRATION: Color photos by Beth Bergman, Staff
Maggie Sutherland must check Lindsey's blood sugar level at least
four time a day...
Baby sitter and godmother Jerri Breslin holds Lindsey...
by CNB