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10-year-old Josie Edlefson: ‘It’s made me braver.’

At first glance, Josie Edlefson looks like every other 10 year old. She smiles easily, has fun with her little sisters, and the American Girl doll in her arms looks as if it’s seen many adventures.

But once you speak with Josie, parts of that little girl give way to a very mature, articulate young lady, who has had to grow up quicker than her parents ever planned. In speaking with her, many times the little girl vanishes, and you have to remind yourself this young lady is only 10 years old.

The diagnosis

It was the end of the school year in May 2016, and Josie, then 9 years old, wasn’t feeling well. The Bureau Valley North student, who lives in rural Walnut, normally loves school, and she had been excited to attend the last couple of days of the school year.

“It was the second to the last day of school, and at the end of the day at school, we went for ice cream like we normally do. I got a small ice cream sundae, and I ate it all,” Josie remembered. “I started walking a little slow; I said I was really thirsty. It was right before softball practice, and I got some Gatorade, and I guzzled it down. I told my coach I didn’t feel well, and then Mom took me home.

“My mom knows I like school, but I said I didn’t want to go, even though it was the last day. My mom took me to the doctor; they thought I was constipated, and they gave me some medicine,” Josie said.

That evening and the next day, Josie didn’t want to eat. Her mom, Sara, called the doctor’s office, and the medical personnel said Josie should be encouraged to eat.

“I started throwing up,” Josie said. “My mom called my Dad (Nathan), and he came home.”

“She was pretty weak,” Sara said. “I knew she was dehydrated, so we took her to the ER. We had no idea how sick she really was.”

Arriving at the emergency room, Josie remembers needing a wheelchair because she couldn’t walk. ER personnel put in an IV and began doing tests. And while it’s not typical for them to test a child’s blood sugar level, whoever ordered that test probably saved Josie’s life.

A normal blood sugar level for a child of Josie’s age would be about 90 to 100. Josie’s level was 853.

A decision was made to send Josie to Children’s Hospital of Illinois at OSF St. Francis Medical Center in Peoria.

“They didn’t think I would make it if I went by ambulance, so I had to go by LifeFlight,” Josie explained in a matter-of-fact tone.

“They were worried she could go into a coma any moment,” Sara added. “She was pretty critical. She wasn’t responding to anyone. It really scares me when I think back on it.”

A crash course

The Edlefsons have no family history of diabetes. Josie’s Type 1 diabetes is often referred to as childhood diabetes. According to kidshealth.org, every year in the United States, 13,000 children are diagnosed with Type 1 diabetes, and more than one million American children and adults deal with the disease every day.

“I just cried,” said Sara of the diagnosis. “(Josie) is scared to death of needles, any shot. I just cried for her, knowing she didn’t realize what was happening or what to expect, knowing she was going to have four-plus shots a day. As a parent, it crushed us. We couldn’t take it away. This is 24/7.”

Josie was in the hospital for three days.

“I remember thinking, ‘How did I get this? Did I do anything wrong?’” she said, adding she asked if she was going to die.

Once Josie was stable, her parents, who had just received the crash course on Type 1 diabetes, were allowed to bring her home.

“Bringing her home, well, it was worse than taking a newborn baby home,” Sara said.

The summer flew by with Josie’s new condition. By the end of the season, Josie started to try and give herself the shots on her own. Watching her favorite team — the Chicago Cubs — seemed to take some of the stress away and get her mind off the impending needle sticks.

“Sometimes they hurt, but barely ever. Really, they don’t hurt that much,” Josie said. “And the finger pricks (to test her sugar levels) really don’t hurt either.”

Josie wears a continuous glucose monitor (CGM), which Sara changes once a week. The CGM runs through an insulin pump and monitors her sugar levels, sending alarms to her parents if her sugars get too high or too low.

Life changes

Josie said her eating habits have changed since her diagnosis. Though she can eat sweets, she limits her intake.

“I think diabetes got me more fit,” said the fifth-grader who still participates in all kinds of sports like gymnastics, volleyball, swimming, basketball and softball.

Josie said if her sugars are too high, she begins to feel tired. If they are too low, she gets shaky.

“I’ve changed,” Josie said. “I’ve been getting the understanding of it down pretty well. I’m still a little scared. Sometimes when the alarm goes off (signaling too high or too low sugar counts), I start crying,” she said.

Regarding the 10 year old’s lifestyle, she said she has friends over to her house, rather than spending the night at their homes. However, two of her friends’ parents feel comfortable enough to have Josie over to their home to do all the fun things 10-year-old girls like to do.

“That makes me feel like I’m a normal person when I’m over there,” she said. “I feel like I was pressured a lot to handle it all and to have to grow up too fast.”

Josie said her friends have been very supportive, and they often remind her about eating enough carbs and making sure her sugar levels are OK. Just recently, she went to a church camp — the first time she has been more than 20 minutes away from her home and her parents.

While Sara admits it was difficult, she said, “(Diabetes) runs her life, but we can’t let it control her and the activities she wants to do.”

Josie has become quite the advocate for others with diabetes, and she’s hoping to raise awareness of the disease. Recently a classmate was diagnosed with the same disease, and she was quick to talk to that child and share her story and experiences.

She and her family have also participated in the annual Juvenile Diabetes Research Foundation event in Peoria, to raise awareness and money to find a cure for the disease.

She also worked with her grandmother, Teri Schlindwein of Princeton, to make a scrapbook documenting her journey with diabetes. That scrapbook won her a grand champion prize at the local 4-H Fair, and her project was sent to the Illinois State Fair, where she also won prizes for her efforts.

But aside from all the needle sticks, the carb counting, the hope for a cure and the idea of having to grow up too quickly, Josie and her family remain positive.

“It makes you realize how precious life is when you are so close to having it taken away,” Sara said. “You just want to hold her and keep her like you would any of your other children, but I know I have to push her to step out of her comfort zone. I know I’ve had to step out of my comfort zone. I don’t want her to feel alone or any less than anybody else.

Sara said the diabetes has caused her daughter to take more control of her body and to speak up for herself. And that she does.

“I hope they will find a cure. If they don’t, they don’t, but I hope there will be a cure for other people and for me,” Josie said. “It’s made me braver.

And her advice to others: “Don’t give up and keep on trying. It’s going to be tough, but you’ll get through it,” she said.

Possible symptoms of Type 1 diabetes

The signs and symptoms of Type 1 diabetes in children usually develop quickly, over a period of weeks. Look for:

• Increased thirst and frequent urination. As excess sugar builds up in your child's bloodstream, fluid is pulled from the tissues. This may leave your child thirsty. As a result, your child may drink — and urinate — more than usual.

• Extreme hunger. Without enough insulin to move sugar into your child's cells, your child's muscles and organs become energy-depleted. This triggers intense hunger.

• Weight loss. Despite eating more than usual to relieve hunger, your child may lose weight — sometimes rapidly. Without the energy sugar supplies, muscle tissues and fat stores simply shrink. Unexplained weight loss is often the first sign to be noticed.

• Fatigue. If your child's cells are deprived of sugar, he or she may become tired and lethargic.

• Irritability or unusual behavior. Children with undiagnosed Type 1 diabetes may suddenly seem moody or irritable.

• Blurred vision. If your child's blood sugar is too high, fluid may be pulled from the lenses of your child's eyes. This may affect your child's ability to focus clearly.

• Yeast infection. Girls with Type 1 diabetes may have a genital yeast infection, and babies can develop diaper rash caused by yeast.

Source: Mayo Clinic.

The causes of Type 1 diabetes

The exact cause of Type 1 diabetes is unknown. Scientists do know that in most people with Type 1 diabetes, the body's own immune system — which normally fights harmful bacteria and viruses — mistakenly destroys the insulin-producing (islet) cells in the pancreas. Genetics may play a role in this process, and exposure to certain viruses may trigger the disease.

Insulin key to sugar entering cells

Whatever the cause, once the islet cells are destroyed, your child will produce little or no insulin. Normally the hormone insulin helps glucose enter your child's cells to provide energy to the muscles and tissues. Insulin comes from the pancreas, a gland located just behind the stomach.

When everything is working properly, once you eat, the pancreas secretes more insulin into the bloodstream. As insulin circulates, it acts like a key by unlocking microscopic doors that allow sugar to enter the body's cells. Insulin lowers the amount of sugar in the bloodstream, and as the blood sugar level drops, so does the secretion of insulin from the pancreas.

The liver acts as a glucose storage and manufacturing center. When insulin levels are low — when you haven't eaten in a while, for example — the liver releases stored glycogen, which is then converted to glucose to keep your blood glucose level within a normal range.

Dangerous sugar level in bloodstream

In Type 1 diabetes, none of this occurs because there's no or very little insulin to let glucose into the cells. So instead of being transported into your child's cells, sugar builds up in your child's bloodstream, where it can cause life-threatening complications.

The cause of Type 1 diabetes is different from the more common Type 2 diabetes. In Type 2, the islet cells are still functioning, but the body becomes resistant to insulin or the pancreas doesn't produce enough insulin.

Source: Mayo Clinic.

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