Jordan Larson’s parents, Kim and Ken, were baffled. Their happy, inquisitive 18-month-old toddler weighed just 8 pounds more than he had at birth. The once-chubby baby had started losing weight for no apparent reason. And Kim couldn’t believe how often he soaked his diaper. “I was changing 30 to 40 diapers a day,” she remembers, and then, “He started vomiting.”
Acting on a hunch, Kim asked Jordan’s doctor to check him for diabetes. Testing found that the tiny boy’s pancreas wasn’t making insulin. His blood sugar level was 938. Normal is 80-120.
“He was literally on the verge of death,” said Kim. The Larsons learned why Jordan had been losing weight. Pleasanton endocrinologist Dr. Mark Christiansen explains, “In the absence of insulin, the body will literally break itself down, both muscle and fat. The muscle will be broken down and converted into sugars. The fat will be broken down and converted into ketone bodies.”
The kidneys try to get rid of the excess sugar. That’s why one symptom of diabetes is frequent urination. The dehydrated diabetic may also be extra thirsty. If it seems hard to breathe, it could be because the lungs are trying to expel the ketones.
As Jordan recuperated, mom and dad learned how to give a shot. “They put us in a little room,” Kim recalls, “with an orange, and needles. Practice on the orange for an hour, then practice on each other. It was miserable, you know, having to cause the other person pain, and then, the thought of having to do that to our baby … .” The Larsons would inject Jordan three to five times a day.
Now 14, Jordan does his own finger sticks to draw a drop of blood to test his sugar levels. Just before he eats, he opens the insulin drip in his insulin pump to manually administer what his malfunctioning pancreas does not. Every two to three days he has to change out the vial of insulin and move the needle (as compared to having to endure a needle stick before every meal). He’s had the pump since he was not quite 9 years old, and has been doing his own sticks since he was 5. How did he make himself do it the first time? He doesn’t entirely remember, but thinks, and his mom confirms, “She bribed me.”
What a difference a pump makes
Today, Jordan, his parents and siblings are grateful for the pump. “If he wants to sleep in ’til 10 o’clock in the morning,” Kim said, “He can!” Before the pump, she said, “We were up every day at 7, whether we wanted to be or not.” Jordan had to eat by 7:30 because his insulin kicked in at 7:45.
The pump also frees him from a rigid diet. Now, Kim said, “If he wants to have Fruit Loops for breakfast, he can.” To keep his blood sugar under control, Jordan’s learned to assign a number to the carbohydrates he’ll consume, which convert to sugar when digested. A slice of bread, for example, is a “1”–spaghetti and meatballs, a “6.” Then, just before he eats, he adds up the carbs and calculates how much insulin he needs: .8 (not quite 1) milliliter of insulin for each carb. “It helps him with his math, his fractions,” Kim said, smiling, “which we like.”
His family’s positive attitude helps Jordan deal with things like the indignity of having a fellow student accompany him whenever he goes to the bathroom, just in case he has a seizure. It’s embarrassing for him, Kim said, but adds, “he has a great group of friends that watches out for him.” At school, when his blood sugar reminder vibrates, “They let him test in the classroom. He’s able to do it underneath his desk enough that no one even notices.”
About those blackouts
Blackouts are an ever-present danger. Jordan’s been averaging one or two a year. In a diabetic, hypoglycemia–low blood sugar–can be just as lethal as too much. If Jordan forgets to eat after he’s given himself insulin, hypoglycemia can result, and, with nothing else to work on, the insulin starts attacking his cells–“Brain first,” said Kim.
Blackouts have put Jordan in the hospital five times so far. His mother said the family has learned to recognize the signs: “At first, it’s almost like you’re drunk. Stumble. Can’t see well.” Blurred vision and numbness in the extremities are also diabetes danger signs.
“You get the shakes,” Kim goes on. “And then if (the blood sugar) keeps continually getting lower, it looks like a seizure, and that is really, really scary.” When it happens, she said, for Jordan it’s like he’s “been hit by a bus.” The last one was about a year ago. To avoid such episodes, she said, “I carry sugar with me everywhere I go. Usually things like apple juice, so I can whip it out, pop it open really quick.” Jordan carries sugar tablets in his fanny pack.
No clear cause
The Larsons have no idea why Jordan–one of four siblings–has diabetes but his brother and sisters don’t. Nor is there any history of it in his family.
Kim has hope that islet cell research may one day mean a cure for her son. Scientists are investigating whether islet cells–which produce insulin–from pigs may one day mean an unlimited source of cells for implantation in diabetics. Dr. Christiansen cautions, “I don’t think we’re there yet.”
If that doesn’t pan out, new devices in development could marry the insulin pump to the device that pricks Jordan’s finger, Kim said, and would let him “read” his levels from the pump alone. The “mechanical pancreas” would equal fewer sticks. Christiansen adds, “There are some monitors in the works that will have a little catheter underneath the skin and can tell you from minute to minute what the sugar is doing. Those are available in other parts of the country right now, but because of reimbursement issues, the company has not released it to the entire country. It can be fairly expensive.” He’s optimistic that, one day, researchers may bioengineer a cell that recognizes sugar, and cues just the right amount of insulin production in the body.
Like any other kid
Despite the diabetes, Jordan acts just like any other 14-year-old. Although he knows an injury will be slow to heal, he still rollerblades around his driveway, zipping in for a shot on net in a solo game of street hockey. When the family vacationed in Hawaii, he “snuba” dived–similar to scuba diving, but not as deep and the tanks float on the surface of the water–accompanied by an instructor. At home, he plays baseball and, like many, admits he has a little fear of heights.
“I can do pretty much anything,” he said, although he knows he can’t, for example, become “an astronaut” because of his risk of seizures.
In summer, Jordan goes to a special camp for kids with juvenile diabetes. Fun for him. A break for mom. “That’s the only time in my life when I’m not thinking about it,” Kim said, “is that 8 to 10 day period.”
Kim said the family “prayed (a cure) would come before Jordan hit puberty. “That seems to be a critical time,” she said, “because their body changes so much, it basically regenerates itself almost. So, after puberty, any damage that’s done is permanent.”
Though, for Jordan, a cure may not be “on the near horizon,” Kim said, with the pump “he has possibilities now.” Watching her son with Boo, the family dog, she said, “He’s just a good kid, we’re lucky to have him.”
Equally proud of all her children, she adds that she and Ken try not to treat Jordan any differently than they do his siblings. The Larsons, she said, just want Jordan to have “a normal life.”
Risk factors
Want to know if you or a child is at risk for developing diabetes? Visit http://www.diabetes.org/risk-test.jsp. To learn more about Juvenile Diabetes, call the Juvenile Diabetes Foundation International toll free at (800) 533-2873. Pleasanton endicrinologist Dr. Mark Christiansen warns, if a child has cold or flu symptoms for more than a couple weeks, be suspicious.
Diabetic-friendly recipes
Root Beer Frosty
1/2 Cup fat-free milk
1 bottle diet root beer
1/4 Cup vanilla low-fat frozen yogurt
3/4 Cup ice cubes
1/2 tsp. pure vanilla extract
Combine ingredients in a blender or food processor, blend 30 seconds or until smooth. Serves 2
–“The New Family Cookbook for People with Diabetes”
The American Diabetes Association
To order the cookbook and for additional diabetes information, visit www.diabetes.org.
Type 1 or Type 2?
Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. In Type 1 diabetes, the body does not produce insulin. Insulin is necessary for the body to be able to use sugar. Sugar is the basic fuel for the cells in the body, and insulin takes the sugar from the blood into the cells.
Type 2 diabetes is the most common form of diabetes. In Type 2 diabetes, either the body does not produce enough insulin or the cells ignore the insulin. When glucose builds up in the blood instead of going into cells, it can cause two problems: Right away, your cells may be starved for energy. Over time, high blood glucose levels may hurt your eyes, kidneys, nerves or heart.
Source: The American Diabetes Association
The stats
Certified diabetes educator Kim Higgins, RN, was diagnosed with Type 1 (juvenile) diabetes when she was 19 years old. To test her blood sugar level, she harvests a freckle-sized drop of blood from the finger tip. She calls the procedure “relatively painless. It only takes five seconds.” Higgins could also prick the palm of her hand or on her arm where there are fewer nerve endings, but said the tip of the finger is preferred.
Diabetes statistics appear to be changing, Higgins said. It used to be that one in 1,000 children would be diagnosed with Type 1. The new numbers coming out put the ratio at one in 500-600–about twice as many, with no theories, she said, as to why. “A big jump,” Higgins agrees, who notes that specialists are seeing diabetes “a lot more in younger children … toddlers and preschoolers.” In her own experience, Higgins said she’s even seen it in newborns, but adds that, “It’s very rare.”
Another change: Type 2 (adult-onset) diabetes has begun to show up in children. Higgins blames obesity and sedentary lifestyles. “All the screen time that children have,” she believes.
Who should be especially cautious?
Endocrinologist Dr. Mark Christiansen said certain people should be extra vigilant about watching for diabetes symptoms and getting tested. They are:
* women who’ve had gestational diabetes
* people who are over 40 and overweight (should get tested every three years)
* those with a family history (need annual testing)
Studies, he said, have shown that people who are borderline Type 2 diabetic can prevent getting full-blown diabetes with lifestyle changes. “If we can get a person who’s predisposed to having diabetes to exercise 150 minutes a week–brisk walking, 30 minutes a day, give up one sitcom rerun a day,” Christiansen said, “and to lose 7 percent of the body weight through dieting–in other words, somebody who weighs 200 pounds gets down to 186 and keeps it–those individuals reduced their risk, compared to doing nothing, by 58 percent.”
And how long, if you have risk factors like obesity and a family history of diabetes, before you go from “almost” to “you’ve got it?” It’s a continuum of risk, Christiansen explains. If your fasting glucose level is closer to the upside of “normal” (120-125) than it is to the low end (90)–then the less time you have before you’re a diabetic. “By the time somebody is diagnosed with Type 2 diabetes,” he said, “that person has already lost 50 percent of the function of their pancreas.”
Today’s treatments, he adds, can prevent the complications of diabetes. Christiansen believes, “The glass is half-full,” with even better treatments, maybe even a preventive vaccine, on the way.
Other resources
Pleasanton’s Zoe Francis, parent of a diabetic teenager, founded a support group for parents in 1998 called the POD (Parents of Diabetics) Squad. Although the group meets irregularly, more information can be found on the POD Squad Web site, www.podsquad.com. Francis said other helpful Web sites are:
* The Juvenile Diabetes Research Foundation, www.jdrf.org or locally, www.jdrf.org/greaterbay
* The Diabetic Youth Foundation (camps for diabetic children), www.dyf.org
* Children with Diabetes, www.childrenwithdiabetes.com
When the POD squad does meet, semi-regularly throughout the school year, it’s from 7-8:30 p.m. on the third Wednesday of the month, Francis said. The meetings are free and open to anyone.
