Fighting for sleep

EDMONDS – Bill and Rhonda Grose would stand on the sidelines watching their son Devan play soccer last year and wonder what was wrong.

“He would always be the last one down the field,” Bill Grose said.

Julie Busch / The Herald Devan Grose, 9, uses a breathing machine to help him sleep through the night.

Devan was taller and heavier than many other kids his age, but that didn’t explain it. When practice was over, while the other kids were standing around, Devan would sit. When Bill Grose asked his son why, Devan would say he was tired.

“I don’t want to use the term lazy, but I thought he was a lazy kid who didn’t want to stand there while the coach was talking,” his father said.

Because Devan was tired so often, he would eat more to try to get some energy. He gained weight. Devan, who just turned 9, weighs 96 pounds, ranking him in the top 10 percent of boys his age for height and weight.

His lack of energy in soccer and other sports was just one part of a mystery his parents had been trying to solve for years.

When Devan was a 3-year-old preschooler, his teacher reported behavior problems, such as the time he threw himself on the floor when she tried to correct him.

“They called me in,” said Rhonda Grose, who remembers thinking: “Goodness, this isn’t him.”

Problems snowballed when he hit first grade. His teacher had him sit in the back of the room by himself so he wouldn’t disturb his classmates. He couldn’t sit still. When his teacher asked the class a question, he would blurt out the answer. For all his hyper behavior, he sometimes fell asleep in class.

Yet, he didn’t have problems with learning. He was bright and would quickly finish his class work.

It didn’t add up.

The questions began to nag his mother: Did Devan have an attention disorder? Did he need medication to calm him down?

“You wonder what you’re doing wrong as a parent,” Rhonda Grose said.

Devan’s twin brother, Ryan, wasn’t having similar problems, making Devan’s behavior all the more obvious. “It’s easy to compare, to see something was wrong,” Rhonda Grose said.

There were other symptoms, but they didn’t seem to connect to problems at school.

When Devan was 5 weeks old, his mother noticed he had irregular breathing when he slept, sometimes choking and gasping.

When Devan was 4, he snored, which is unusual for a child his age and a signal that his breathing airway was not completely open. His parents had his adenoids removed, hoping it would help.

He was restless in his sleep, often twisting the sheets off. He would turn himself completely around while sleeping and his head would often end up at the foot of the bed.

Waking up mom

Devan not only continued to snore, almost every night when he couldn’t sleep he would go to his parent’s bedroom and wake them up.

Rhonda Grose became chronically tired from interrupted sleep. “How can that child be waking up?” she wondered. “He’s tired, too.”

Last fall, when the Groses asked doctors if they thought the boy had attention and hyperactivity problems, they were referred to Dr. Ron Green, a pulmonologist and sleep disorder specialist.

Green paid attention when Rhonda Grose said her son was waking up a lot during the night. In September, Devan was sent to the North Puget Sound Center for Sleep Disorders in Everett.

Devan can still point to where 11 wires were attached to his chest, neck, head and ankles overnight to monitor his sleep.

About four weeks later, they finally had a name for the problems he’d had nearly since birth: sleep apnea.

In the most simple terms, sleep apnea means breathing stops during sleep, causing the person to wake up. It triggers the brain to react as if the person is being choked, “like sticking your head in a bucket of water,” Green said. Sleep is constantly interrupted.

Monitors attached to Devan’s body at the sleep clinic found that he stopped breathing 14 times an hour. On average, he stopped breathing for 20 seconds at a time.

When breathing stops, blood oxygen levels plummet. This stresses the cardiovascular system and can cause high blood pressure.

Weight issues, a family history with sleep apnea which Devan’s grandfather also was diagnosed with and the structure of the throat can all play a role in causing the problem.

How much of Devan’s sleep apnea was caused by genetics and how much by his weight “is very hard to answer,” Green said.

Being overweight can complicate apnea problems.

“As you’re fat on the outside, you’ll be fat on the inside,” said John Basile, a respiratory therapist at the Swedish Sleep Medicine Institute in Seattle.

If this is combined with other problems, such as enlarged tonsils, “it can crowd the already small airway,” he said, complicating breathing problems.

Sleep problems often affect appetite.

“When you’re tired, you’re looking for energy,” Basile said. That causes people to snack more on energy foods containing sugars and simple carbohydrates, and so they gain weight.

Frequent sleep disruptions may also cause problems at school by affecting children’s memory, attention and processing, said Dr. Sandra Hassink, who runs a weight management clinic for the Alfred I. duPont Hospital for Children in Wilmington, Del.

If kids are tired when they wake up in the morning, nap during the day, have poor concentration and performance issues at school, it could indicate a sleep apnea problem, she said.

“Often these kids can look inattentive, almost like they have attention problems,” Hassink said.

Corrective measures

Sleep apnea is another in the list of medical problems related to childhood obesity that parents need to be aware of, Hassink said. The heavier you are, the more likely you are to have sleep apnea.

“It reinforces the point that obesity is not a benign condition in childhood. There really are medical problems that come out of this that affect them … and affect their function and ability to learn,” she said.

Weight loss can help correct the problem. So can sleeping with a breathing mask hooked to a machine that forces air in to keep the breathing passages open. One, known by the initials CPAP, for continuous positive airway pressure, costs about $1,500, Green said.

The biggest adjustment is learning to sleep with a mask over your face and covering your nose, Basile said. “It’s like getting used to eyeglasses; pretty soon you get so used to them and forget they’re on your nose.”

Some patients lose weight simply by hooking up to the machines when they go to bed. With a restful night’s sleep, their metabolic levels are higher during the day for longer periods of time, Basile said.

“They have more energy, so they’re more active,” Green said.

Devan, who began using the machine in October, noticed a difference within days. “My body … stopped being tired,” he said. He could sit still in class and not move around.

“I can actually focus, it helps me pay attention better. I don’t get in trouble – as much,” he said with a smile.

Although he initially lost about 6 pounds when using the machine to help him sleep, he has since regained it.

Even so, Rhonda Grose said the changes in his behavior and energy are dramatic.

“Boys are boys; I understand that,” she said. “My life is so much easier. I used to feel bad. He’s a twin. I had to discipline him and not the other. … It was lack of sleep.”

Devan can now remember when his mother asks him to do simple things like take out the garbage. Before, he was easily distracted and would forget her requests almost as soon as she asked them.

On the soccer field, “he ran like he never ran before,” she said.

He played basketball during the winter, and this spring he’s playing outfield and third base on the South Mukilteo Little League Falcons baseball team.

His parents said they didn’t realize how much his life had changed until they had a problem with his night breathing machine that took a couple of days to fix.

“I wish people could have seen him that night at dinner, watching him rock all over the place” in his chair, Bill Grose said. The behavior stopped as quickly as it started once the machine was fixed.

“It’s amazing,” his mother said. “I’m scared to let him go without it.”

“There are all these kids out there on medication (for attention and hyperactivity disorders) who just aren’t sleeping,” Bill Grose said.

“All they are is tired.”

Reporter Sharon Salyer: 425-339-3486 or salyer@heraldnet.com.