[karen]

Chicago Tribune news | Registration

[Who?]

Can someone summarize for those of us who refuse to "register" just so we can read a newspaper article?

Tnx

[JediSkipdogg]

Karen, you need to copy the article here so we can read it.

[karen]

Girl, interrupted
SOPHIE HAS DIABETES AND NEEDS BLOOD TESTS DAY AND NIGHT. HER MOTHER'S CRUSADE WOULD GET SCHOOLS TO HELP.
SOPHIE ELDER IS CRAVING one of those chocolate-chip cookies that look so harmless on the kitchen counter. She curls up like a kitten next to her mother on the couch in their Uptown six-flat and ever-so-nicely whispers, "Can I have one?" Suzanne Elder smiles and says yes, as if the answer were that simple.

The reality for Sophie, a 7-year-old diagnosed last spring with Type I diabetes, is that it's the glucometer she races down the hallway to grab that will decide whether she can devour that cookie. The pocket-sized instrument comes with a tiny lancet inside a fat pen. Elder places it against Sophie's fingertip, which is pricked lightning-fast, drawing blood. Sophie winces. The drop is tested by the glucometer, which reads her blood sugar level.

Sophie looks at her mother like she's waiting on a gumball to drop. It's 249, too high for a cookie. Disappointment clouds Sophie's little face, and not just because she can't have a cookie when she wants it. She is tired. Tired of shots and finger pricks, of calculating the value of each morsel of food. Tired of diabetes' control over her life.

"There is an indefinite, unrelenting number of things we have to do all day long," Elder says. "Our day-to-day life is dictated by numbers."

The struggle to understand her daughter's disease led Elder down a long path that has taken her to the General Assembly. Working with a state lawmaker, Elder, a policy analyst, wrote legislation that, if passed, will make it easier for diabetic children in Illinois to manage their condition at school.

Rep. Tom Cross (R-Oswego), whose 13-year-old daughter is a diabetic, filed House Bill 146 in December.

The Elders' journey began eight months earlier at Evanston Hospital. Sophie's translucent complexion had become gaunt and gray. Her almond-shaped eyes were sunken and dull. She was hospitalized for three days and diagnosed with Type I diabetes. Suddenly the telltale signs, which had escalated imperceptibly over several months--extreme thirst, constant fatigue and frequent urination--made sense.

Of the 20.8 million people with diabetes in the U.S. about 1.5 million have Type 1, the more serious form that usually is diagnosed in childhood. Sophie's body had stopped making insulin, a hormone stored in the pancreas that helps cells use the glucose--the body's main source of energy--obtained from food. Sophie would need multiple injections of insulin every day and night to stay alive.

Type 2 diabetes, in which the body does not make enough insulin or doesn't use it properly, is much more common and can be controlled with diet and exercise.

Elder and her husband, Toby, left the hospital with a bag of syringes, three vials of insulin and a glucometer with 50 test strips. Sophie left with a T-shirt that she'd painted, a little doctor's kit and a chronic disease that would forever control her life.

But she thought diabetes was like a bad cold. That it had an end. Then she saw her mother and father filling syringes. They wanted to prick her finger every few hours, even at night. She fought back, and they briefly relented, allowing her to sob for a whole afternoon as they held her.

"I felt like I was wearing pain," Toby says.

One day, a weary Sophie handed her mother a letter with a drawing of a pancreas that she labeled "asleep."

"I hate diabetis," she wrote. "I wish they would find a cure. I GOST HATE IT."

When Sophie was diagnosed, she was a 1st grader at North Park Elementary School. Principal Lynn Lawrence could not allow the school staff to monitor Sophie's blood-sugar levels or administer her injections. No one knew how to do it, and Lawrence was concerned about the potential liability--and about Sophie being harmed if someone made a mistake.

"It was all so new," Lawrence recalls. "I guess I was just plumb afraid."

So Suzanne Elder quit her job to be at the school every two hours to test Sophie's blood sugar and, before lunch, inject her belly with insulin. Mother and daughter were essentially handcuffed to each other.

But Elder realized that this was not the solution. Sophie had been on the cusp of little-girl independence when diabetes threw her back into her parents' constant care, as though she were a toddler again.

"It stigmatized her," Elder says. "Sophie was the kid in the school that needs her mother to come to school every day to do something for her."

Elder went before the faculty and told them about Type I diabetes, making a case to allow North Park staff to be trained to test blood-sugar levels and give injections.

She studied laws and school policies across the nation and soon learned that her family was not the only one to have encountered resistance.

She grew alarmed at the stories from parents who had clashed with their school districts: students forbidden to test their blood in class or keep food at their desks so they could quickly deal with low blood sugar, which if not treated can cause unconsciousness or death; students having to miss class and be chaperoned to the office for a routine test; students barred from extracurricular activities because of it.

Maciorowski, whose 9-year-old son has diabetes, filed a federal civil rights complaint in 2005 against Aurora-based Indian Prairie School District 204 because the district's policy was to call 911 or her if her son needed insulin during extracurricular activities. At one point, he was not allowed to test his blood sugar in the classroom.

The case was settled last year, and the district is now providing for her son's needs, but Maciorowski, a physician, said her battle was hard-won and her son paid the price.

"This is the first year that my son is participating in extracurricular activities," says Maciorowski, an internist. "With all the challenges, frustrations, variables and stress of this disease, one does not need the added stress that some school systems provide. These children need accommodations during the school day to be able to monitor and treat the disease while being able to stay in the classroom so that they too may learn."

It took Elder four months to write The Care of Students with Diabetes Act. She drove to Springfield and hand-delivered it to Cross.

If it passes, H.B. 146 will set up a protocol for how diabetics can manage their disease in the classroom. It also would compel schools to allow non-medical staff trained in diabetes care to inject insulin or check blood sugar.

"If I didn't do something, I think I would have imploded," Elder said. "It's about turning grief into something positive."

[karen]

Managing Sophie's blood sugar is a continuous, tricky, mathematical calculation to try to match every bite of food with the amount of insulin Sophie needs. Not only can diet and activity wreak havoc with blood-sugar levels, but so can emotions, growth spurts, fatigue and even the sniffles.

Sophie has learned to listen to her body whispering to her. When her blood sugar is low, "I feel shaky, mostly," she says. It means her brain is not getting the nutrients it needs to function. She cannot think clearly; she's confused. It can lead to a seizure and even death if she doesn't eat or drink something sweet to raise it.

When her blood sugar is high, which in the long run will cause damage to her major organs, she feels edgy and mad. She'll need a shot of insulin to bring it down.

"We're supposed to be able to perfect something that the body does as unrelentingly as breathing," her mother says. "I don't know any of us who are trained to be professional pancreases."

So, instead of perfection, there is trial and error.

At a Florida water park in August, Sophie was happily floating on an inner tube with her dad, twisting through the water maze, when she started feeling shaky. Toby swooped her out and headed toward the lockers, where they had glucose tablets--fast-acting sugar.

"Hurry, Daddy. I'm fading," Sophie said to him. He ran the length of a football field with Sophie on his back.

Nighttime is especially worrisome. Suzanne and Toby stay awake until midnight to prick Sophie's finger while she's sleeping and make sure her blood sugar is normal. They set the alarm for 3 a.m.--another check.

If Sophie's blood sugar is low, she has to eat. About 20 minutes after she eats, her parents check her blood again to make sure the sugar level is rising.

"Have you ever tried to get a kid to eat in the middle of the night?" Toby said. "It's not easy."

On the bad days, Sophie's finger is pricked up to 12 times. Her parents have lightheartedly renamed the test a "checkarooni" so Sophie doesn't feel like she is the one being evaluated all day long.

"I tell her the numbers say nothing about who she is," Suzanne says.

Thanks to her mother's efforts, Sophie's school now provides the care she needs. Lawrence allowed her staff to be trained over the summer in diabetes care. Dozens volunteered.

Elder let them all practice giving injections on her own belly; injecting an orange wouldn't have been the same.

Among the volunteers was Lawrence, who has a strong fear of needles. "That was the last thing on Earth that I would have ever pictured myself doing," she says of the training. But "this disease is so manageable and injections are such a minor thing in the big scheme of things."

Now in 2nd grade, Sophie learned recently how to give herself the shots. Part of her confidence came from her parents, who allowed her to practice on them so that her body wouldn't be the only pin cushion in the house.

Sophie lifts up her shirt, exposing her stomach, and pinches a fold of skin. She pushes in the ultra-fine needle. Sometimes it feels cold; sometimes the insulin burns as it flows into her body.

"It doesn't hurt," she says, anticipating the obvious question.

Then out of the blue, a glint of hope wells up. "They found a cure in mice," she says shyly, as if talking about it would jinx something.

Her parents try to make sure the continuous monitoring doesn't deprive Sophie of childhood's joys.

Doctors tell them Sophie can live a normal life, eating or doing anything she wants, as long as they all are vigilant. There can be no off time.

One morning before lunch in January, Suzanne Elder got a call from Sophie's teacher. A classmate had brought in a cake, and Sophie, craving a slice, had not been exactly truthful with her teacher about her blood sugar level: She reported an almost perfect reading when it was actually high.

But when Sophie came home, she didn't get scolded for fibbing, her mother says.

"All she wanted was a snack."

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Carolyn Starks is a Tribune staff reporter.

cstarks@tribune.com

[camjen1]

Hmmmmm I read it just fine without having to register.

[jeggeman31]

Originally Posted by camjen1

Hmmmmm I read it just fine without having to register.

Well I guess you are special

Maybe it is an Ill thing... I dunno but I could not read it until it got posted here.

[camjen1]

Originally Posted by jeggeman31

Well I guess you are special

Maybe it is an Ill thing... I dunno but I could not read it until it got posted here.

LMAO Jim!!

I'm in Indiana but maybe the Tribune knew I was a resident of Illinois before and granted me the special privilege.

[jeggeman31]

Originally Posted by camjen1

LMAO Jim!!

I'm in Indiana but maybe the Tribune knew I was a resident of Illinois before and granted me the special privilege.

Blond moment I guess.... Wait I am not blond. I guess I will blame it on the kids fighting, while trying to type.... Wait the kids are at the YMCA swimming and it is just me home alone. **** Old Age.