Taking their best shot at managing diabetes

Real Parents is an occasional series looking at the lives of ordinary families.

Kyle Hughes' favorite number, when he pricks his finger and runs the blood through his meter, is 95.

"Because it's so cool," explains the 4 ½-year-old: It's racecar Lightning McQueen's number from Disney's "Cars."

For his mom and dad, Christy and Kurt Hughes, it's "cool" because it means Kyle's blood sugar is at an optimal level, between 80 and 130.

Parenting a child with type 1 diabetes is all about the numbers: counting every carb; eating at set times; adjusting units of insulin; and always, always checking that blood sugar.

Too low, and you risk a child getting drowsy and falling into a coma. Too high for too long, and he could end up with organ damage or ketoacidosis, which can lead to death.

"Our job as parents is to manage him now and keep him in a healthy range," Christy said. "His job is to be a kid."

Information on the Web

Juvenile Diabetes Research Foundation: www.jdf.org.

An online support team, newsletter, kid resources and current research. The Northwest chapter provides a "Bag of Hope" to new families, a parent-to-parent network and local resources at www.jdrfnorthwest.org.

Children with Diabetes: www.childrenwithdiabetes.com.

Online community, including a

family support network and lots

of resources.

National Diabetes Education Program: www.ndep.nih.gov/diabetes/youth/youth.htm.

American Diabetes Association: www.diabetes.org.

Crash course

There's no easy time to be diagnosed with diabetes — kids deal with school issues; teens can be rebellious risk-takers — but toddlers rank up there as the most challenging. It's nearly impossible to reason with them, and they can barely talk.

Kyle ended up at Children's Hospital & Regional Medical Center when his pediatrician diagnosed diabetes at his 18-month checkup. Christy slept over every night during his weeklong stay. They got a crash course in needles, drugs, meters and all the terrible things that can go wrong.

With no family history of the autoimmune disease, "It's not something I ever expected to know about," Christy said.

In the hospital, it took two people to give Kyle his shots. "You sweat, your hands shake — you don't want to do it," Christy said. "Unfortunately, to keep your child alive, you have to do it."

Even when they got home and Kyle stoically accepted the "pokes" — rotated around the fatty areas of his legs, bottom and upper arm to avoid scar tissue — "Every time I'd give him a shot, I'd walk away to cry," Christy said.

"Diabetes makes you feel helpless as a parent," Kurt said. "All day long, you're taking guesses."

"Out of nowhere"

"Most of the time when a child is diagnosed with diabetes, it comes out of nowhere," said Nadine Heichel, executive director of the Northwest chapter of the Juvenile Diabetes Research Foundation. "From that point on, your life turns upside down. The worst fear is your child will go into a coma at night. You never get a solid night's sleep again."

It's Kurt's job to test Kyle's blood sugar at night; at first, he had to reach into Kyle's crib to prick his finger. If it was low, he'd wake him up to drink juice and eat a snack.

"Getting an 18-month-old to eat a Nutri-Grain bar at 3 a.m. — it goes against everything you want to do," Christy said. At first, they tried two shots a day, but that required a strict diet regimen, which ultimately encouraged food battles. "You can't force-feed a 2-year-old," Christy said; on one horrible day, they had to shove frosting from a tube into his cheek to raise his blood sugar.

Now he gets five to six shots a day, each adjusted to how many carbs he ate at meals and snacks. He checks his own blood six to 10 times a day.

At Halloween, they trade Kyle's bucket of candy for a toy, but don't deprive him of all treats. He plays T-ball and soccer and loves riding his bike. "We want him to be as normal as we can," Christy said.

"The thing about diabetes is it's invisible," Heichel explained. "Kids don't look any different. Most people don't have any idea of the severity."

When they eat out, Christy will give Kyle his insulin shot at the table. "We get a lot of stares at Red Robin," Kurt said, but Christy figures people can deal with it. "I'm not going to run to the bathroom and go hide. I'm not going to teach my son to be ashamed of his disease."

People who don't understand the difference between type 1 and type 2 diabetes (see sidebar) have asked Christy, "What do you feed that child?"

First line of defense

One of the challenges with young children is finding a shared language to describe how the disease makes them feel. "Sometimes it's hard to distinguish high or low; on both sides, he gets kind of loopy," Christy said.

A cold or ear infection can cause blood sugar to rise, even with insulin. So far he's managed to stay out of the emergency room, but any illness is risky. "We go into sick-day routine," Christy explained.

If Kyle's little brother, 2 ½-year-old Ryan, misbehaves, he ends up in a time out. "But with Kyle, the first line of defense for everything is to check his blood sugar. If he kicks his brother, we check his sugar. If he's too quiet, we check his sugar.

"It's hard to tell what's normal 4-year-old behavior and what's the disease," Christy said. "If his sugar is low and you give him juice, within four minutes, he's a different child."

50 things to know

All parents worry about their kids, but when something as simple as a missed snack can be life-threatening, it's hard not to become obsessive. "Your worry level goes through the roof," Christy said.

"I'm always overprotective. The question is how much I show that to him versus just doing it behind his back. It's always there."

She tries to be watchful but avoid hovering. "If Ryan walks away from the table without eating all his meal, go for it," Christy said, "but if Kyle does, I have to say, 'Look, you need to finish this.' "

Kyle recently tried his first play date, just for an hour, after Christy had fed him and given him his shot. It's a balance to make sure people understand potential risks while not freaking them out: "If there's a problem, here's the 50 things you need to know," Christy says dryly. "It's a lot of responsibility to ask someone to do."

Working with the world

After years with Christy's parents as their only baby-sitters, the Hugheses met a neighbor with a teen daughter who also has diabetes and knows the insulin drill. Now she baby-sits every other week so they get a date night.

The Hugheses, who both work full-time at Microsoft, coordinate with their nanny to track everything Kyle eats in a self-designed journal, which also lists the carb counts for his favorite foods and a chart for calculating insulin.

"I don't trust a day care," Christy said. Even looking for a part-time preschool was "an eye-opening experience" when they were repeatedly turned down. (Since he attends only a couple hours, he doesn't need shots while there.)

Kyle won't turn 5 until July, so his parents decided to wait another year to start kindergarten. Shy by nature, that gives him extra time to learn to speak up about feeling ill and postpone wearing an insulin pump.

While Kyle is at preschool, the nanny takes Ryan to gymnastics classes and spends time with Ryan one-on-one. With Kyle's medical needs demanding so much attention, it's "the second-child syndrome times two" for Ryan, his dad said.

Right now, the Hugheses are raising money for "Team Kyle" at the foundation's annual fundraiser, Beat the Bridge. Last year, Kyle served as the event's youth ambassador. Their goal this year is $20,000.

They're active with the organization, with Kurt helping with its Web site and Christy serving on its board.

Both parents believe researchers will find a cure by the time Kyle is in high school. Kurt's theory on why Christy is such a dedicated volunteer: "When Kyle is 20, I think she wants to be able to look him in the eye and say, 'I did everything I could to take this away from you.' "

Stephanie Dunnewind: sdunnewind@seattletimes.com

or 206-464-2091