Living second by second: Mothers of children with diabetes share their stories
Published 12:00 am Sunday, February 19, 2012
By Katie Scarvey
Three-year-old Abigail Eagle runs back and forth from her living room to her bedroom royally attired in a princess outfit. She’s playing with her friend Caden Farmer, who’s 5.
Abigail’s princess dress has an unexpected accessory — a pink insulin pump. Caden also has a pump — his is blue — and is more than willing to pull up his shirt to show you.
Both Caden and Abigail have type 1 diabetes. Type 1 diabetes, according to the Centers for Disease Control website, “usually is first diagnosed in children and young adults, although it can occur at any age. Type 1 diabetes is an autoimmune disease that may be caused by genetic, environmental, or other factors” and accounts for about 5 percent of diabetes cases.
In type 1 diabetes, the pancreas loses the ability to produce insulin, which is necessary for the body’s cells to be able to use glucose.There is no known way to prevent type 1 diabetes, as there is with type 2 diabetes, and effective treatment requires the use of insulin.
It also requires eternal vigilance for the parents of a young diabetic.
Abigail’s mom, Kimberly, hovers close by, as does Caden’s mom, Kristen. While one might assume that their insulin pumps are enough to regulate the children’s blood sugar and keep their glucose levels in a healthy range, that is not the case.
Every so often, play screeches to a halt as Kimberly and Kristen do a finger prick test to determine their children’s glucose levels or to give them a snack. Physical activity can make blood sugar levels drop quickly, Kimberly explains.
“Its like a guessing game,” she says. “You have to have the right amount of carbs, and activity level is a big part of the equation.
Monitoring and feeding a child with type 1 diabetes can be complicated, and the stakes are high.
This morning, Abigail’s level has plummeted from 300 to 187 in only 20 minutes, still a little higher than her doctor-recommended target of 158, somewhat higher than what is considered normal for most children, Kimberly says.
“That gives you an idea of how fast it can drop,” Kimberly says.
“When we go swimming, I have to check Caden every 15 minutes,” says Kristen who notes that Caden’s blood sugar levels have dropped from 406 to 32 within an hour.
Sometimes Abigail doesn’t want to eat, and while for most kids that wouldn’t be cause for alarm, Kimberly must compel Abigail to eat when she needs to because for children with type 1 diabetes, it’s a matter of life and death.
Caden and Abigail’s parents can’t even relax for an eight-hour stretch to sleep. They must get up in the middle of the night to check blood sugars, which can fluctuate wildly.
“I can’t remember the last time I had a good night’s sleep,” says Kimberly, who has an older son, Seth. “You’re like a walking zombie.”
Kristen, who must meet the demands of mothering three other children, also knows that sort of fatigue — and she worries about its consequences.
“What if I do something wrong because I’m so tired?” she says.
The Eagles have had some scares since Abigail’s diagnosis. In January, Abigail announced that she didn’t feel well and hit her head on a table because of a drop in blood sugar. She’s also passed out in the bathtub, hitting her head and necessitating a 911 call.
“We don’t live day by day,” Kimberly says. “We live second by second.”
Abigail was diagnosed about a year ago, Kimberly says. She had lost about 10 pounds and was drinking and urinating a lot — all symptoms of type 1 diabetes.
When they took her to a doctor, she got her diagnosis — and a hospital stay.
Caden was diagnosed three years ago. Not long after he’d been in the hospital with a diagnosis of HSP (Henoch-Schönlein Purpura), an auto-immune disorder which was treated with steroids, he began acting strangely. He would wake up at night, “screaming for fluids,” Kristen said. In the morning, she’d often find him on the floor sleeping beside her bed.
More than eight months pregnant at the time, Kristen told Caden’s doctor that she needed him to figure out what was wrong. That’s when they found out that Caden had type 1 diabetes.
When Kristen was in the hospital, she begged to be released as soon as possible so she could get home to care for Caden. Kristen’s mother had been taking care of him but was so overcome with the pressure that she left almost immediately after Kristen came home.
Kimberly went back to her job at the Lutheran Home four weeks after Abigail was diagnosed, but she was unable to make that work. Her mother was taking care of Abigail and “she couldn’t take it,” Kimberly says. The stress of being a caregiver and the fear of doing something wrong unintentionally and hurting Abigail was more than she could handle.
It’s difficult for parents with children who have diabetes to find affordable child care, since many providers are wary of handling a health issue that can be so complicated and so fraught with danger.
Kristen says they’re lucky that Caden was able to remain in his day care facility. She’s already worried, however, about what will happen in the fall when he goes to school.
Being able to just relax and let down their guard occasionally is something these parents miss.
“We don’t get a break,” Kimberly says. “Family members don’t want to attempt to take care of your child. But we’re scared, too.”
And with good reason. Caden has had seizures and migraines, all caused by low blood sugar, Kristen says. Even colds or viruses that wouldn’t be a big deal to most kids can lead to hospital visits for a child with type 1 diabetes, Kristin says. Caden’s diabetes has put him in intensive care, with his blood sugar levels over 600, which put him into diabetic ketoacidosis, or DKA, a very dangerous state. “He almost died,” Kristen says.
Abigail had to take antibiotics for six months because she couldn’t get rid of an infection, Kimberly says.
Kristen admits that she felt angry for a long time, questioning why her child had to have this condition.
“I hate diabetes,” she said. “I hate it. I never knew it was even a possibility until it happened.”
Giving shots is difficult, Kimberly and Kristen agree, as is changing the needles on the insulin pump. “I used to cry every time,” she said. “Sometimes I still do.”
Both Kimberly and Kristen have gotten used to the never-ending finger sticks, up to 21 times a day, to monitor blood sugar levels.
It’s difficult for Kristen and Kimberly to see how damaged their children’s fingertips have become from constant pricking.
It’s also hard to have to wake Caden up in the middle of the night and make him eat something when he needs to raise his blood sugar level, Kristen says.
Both mothers also worry about their non-diabetic children, who can feel marginalized by so much attention being paid to their diabetic siblings.
It can also be heartbreaking for them to realize that their children don’t understand the permanence of their condition.
“Bless their hearts,” Kristen says. “They still think it’s going away. It’s hard to explain that they’re going to have it for the rest of their lives.”
One important source of support for Kimberly and Kristen is a play group they are part of, with two other mothers whose children also have type 1 diabetes.
“We try to get together a few times a week,” Kimberly says. It’s an unusual scene, she says — “four little kids with insulin pumps.”
Kimberly and Kristen find a lot of strength from the group. “We’re like family,” Kristen says.
“We’re closer than family,” Kimberly adds.
“It helps you when you think you’re going to lose your mind,” Kristen says.
And now, all four of the families are waiting to get diabetes alert dogs, specially trained dogs that can alert them of unhealthy blood sugar levels in their children (see story on 1E).
Kristen and Kimberly are looking forward to the day they’ll be able to test their children less, making their lives more normal — and actually be able to get some sleep at night as the dog takes on the guard duty that normally never ends for parents of children with diabetes.