What is type 1 diabetes? A parent's point of view

Staff Writer
Columbus Parent

My 1-year-old son was crying uncontrollably, which his dad and I thought was because of the houseful of loud people. So we gave him more birthday cake, which made him cry even more.

Several visits to the pediatrician followed, looking for reasons he was crying for days on end. Finally, one astute doctor in the practice asked us to collect his urine so she could run some tests. Collecting urine from a baby still in diapers isn't an easy task. But we managed and promptly took the specimen back to the pediatrician's office. She told us she would call us in a few days with the results.

Before I even pulled into the driveway, not more than two miles from the doctor's office, she called and said to take Cody to a lab to get a blood test right away. He might have diabetes. And the blood test quickly confirmed this dreaded suspicion.

Less than an hour later, he was admitted to what now is called Nationwide Children's Hospital, where Cody was diagnosed with type 1, or juvenile, diabetes. Our world changed forever.

Our first-born, this perfect child, now needed insulin just to stay alive.

I'll never forget those days we spent in the hospital. He was kept in a crib with a top that came down over him like a cage. I knew this was to keep him safe, but it broke my heart just the same.

After starting on insulin, we could see the change in him. We realized how much better he felt. And he took his first steps in the halls of Children's. I can still see him in his little hospital gown, open in the back with his little diaper exposed, and non-slip yellow footie socks.

I also remember thinking that a cure most definitely would be discovered in 20 years or less - in time for him to go to college free of this disease. He turned 16 this past summer and a cure has yet to be found.

Type 1 diabetes strikes children suddenly, makes them dependent on injected or pumped insulin for life, and carries the constant threat of devastating complications. While diagnosis most often occurs in childhood and adolescence, it can and does strike adults as well.

But the Willsons said they deal with challenges using humor. "I stayed with Grayson the first night at Nationwide Children's Hospital," Frank said. "We watched the movie Talladega Nights and laughed our heads off. Right as we were drifting off to sleep she looked at me and quietly said, 'You've got to shake it ... before you bake it.' At 1 a.m., I think we woke up the whole endocrinology floor!"

When asked what her biggest fear about diabetes is, Lisa said, "Making sure that Grayson gets into good habits now and reinforcing what can happen in the long term if poor choices are made now or later. I hope that she never holds back from doing what she dreams about because of this disease. "

It can be a daunting task to be sure your child is safe away from home; even at school. "Every year since Joe was diagnosed, either Rebecca or I, or sometimes both of us, have attended his class at the beginning of the year and talked to the kids about the basics of what diabetes is and how and why he may need a snack at different times and go to see the nurse every day," Chip said. "The nurses, teachers and staff in Olentangy Schools have been very supportive and easy to work with to manage Joe's care during school."

Kellen, now 20, was diagnosed at age 13. "It was about 2 a.m. when we were told to get him to the hospital by our doctor because his blood sugars were around 900-1000," Williams said. "We didn't know what that meant, but went as directed. Not knowing what was wrong and what a profound life-altering event this was for our family was the worst part. Realizing that this disease is manageable and has wonderful support organizations and people were the best parts."

"The shots were a nightmare as our nervousness and guilt at giving them was translated to nervousness by our son receiving them," Williams said. "Fast forward to the pump. The freedom and improved lifestyle it provided was a tremendous relief."

Carriero said she can't think of a way that diabetes hasn't changed her family's lives. "The permanency with which diabetes takes up residence in your house is unbelievable," she said. "Not one meal goes by without a poke, or [asking] did you bolus [give insulin through the pump]?"

"Diabetes has required us to maintain absolute and complete supervision of Simon," Matt said. "Not just what he eats and making sure he receives insulin, but also the effect his activities may have on his blood sugar. We must always have an idea of his blood sugar to keep it in a safe range."

The Scheibecks tell Simon's friends that, "Your pancreas makes insulin to process the food you eat and Simon's pancreas is sleeping. So he uses this pump to give him the insulin he needs to live," Matt said, and added with humor that seems to be part of the coping mechanism of all families dealing with diabetes, "It is also a game machine, cell phone and human transporter, although they don't believe that part so much."

Type 1 diabetes occurs when the body's immune system attacks and destroys certain cells in the pancreas, an organ about the size of a hand that is located behind the lower part of the stomach, according to the Juvenile Diabetes Research Foundation (JDRF) website.

These cells - called beta cells - are contained, along with other types of cells, within small islands of endocrine cells called the pancreatic islets.

Beta cells normally produce insulin, a hormone that helps the body move the glucose contained in food into cells throughout the body, which use it for energy. But when the beta cells are destroyed, no insulin can be produced, and the glucose stays in the blood instead, where it can cause serious damage to all the organ systems of the body.

It's commonly believed among the diabetes community that tight blood sugar control can alleviate or even reverse some of these complications. So what is considered tight control? Optimal blood sugar levels are between 70-110 mg., a reading taken using a portable blood glucose (or blood sugar) meter. The more often blood sugar is in the optimal range, the lower the probability of complications.

In the short-term, the biggest risk of type 1 diabetes is severe low blood glucose. Dipping below a normal range, even by just a little bit, can sometimes cause a person to be shaky, disoriented and if very severe, cause a seizure, or even death.

My son has endured two seizures and it's two more than any parent should have to see. Gruesome as it may seem, it was during those times when I wished I had a video camera so I could show people just how devastating this disease can be. His eyes were rolled back into his head, he was foaming at the mouth and making noises that seemed inhuman.

One of the first formal diabetes fundraisers I attended featured as keynote speakers a couple who had a child with type 1. They told their story about how they raised their son and kept him in tight control, informed all his friends about what to do if he had a "low," and made regular visits to the endocrinologist's office. And then every parent's worst nightmare happened: When he went away to college, he had a low in the middle of the night and died.

As parents, we put those thoughts way in the back of our minds, but they're always there. "One of my biggest fears is that Joe will slip into a coma one night while we sleep," Chip Chapman said.

And as kids get older, similar, yet new challenges present themselves. "During times of transition when my son's lifestyle changed dramatically (from home to college, college to home), his activity and eating patterns changed drastically, which led to enormous changes in his blood sugar levels," Williams said. "Twice he drifted below 70 and we had to call the squad to help revive him. We are also frightened of college drinking and the impact it could have not just on him, but if he were to pass out, people might misinterpret the condition thinking he was drunk instead of passing into a coma state."

"Our heads were spinning with the diagnosis," Williams said. "Then considering how we had to cover the expenses (not currently supported by the government in Ohio) and who was a good endocrinologist, who was good with kids, who had a management philosophy that was faithful to our family's needs ... it took some time." Which is where local support groups and agencies come in.

The mission of JDRF is to find a cure for diabetes and its complications through the support of research. The Mid-Ohio Chapter and chapters across the globe raise funds that go directly into the hands of researchers. Events such as the Walk to Cure Diabetes draw thousands of participants. Just 2009's Columbus walk raised more than $650,000 toward a cure.

CODA offers summer camps for children with diabetes, ranging from day camps, three-day camps and week-long adventures. CODA's fundraising events include the Swim for Diabetes, Swing for Diabetes - a golfing event - and the ever-popular Ohio State vs. Michigan Celebrities for Diabetes luncheon.

Both organizations provide the much-needed support for families - a Godsend to the newly diagnosed and veterans alike.

All the parents interviewed expressed thankfulness toward these organizations for introducing them to families like their own. "Thanks to JDRF, their network of families connected us with others from which we could learn," Scheibeck said.

"The best advice for a parent trying to manage a child's type 1 diabetes is to partner with a pediatric endocrinologist who works with a diabetes team consisting of diabetes educators, dietitians, social workers and perhaps psychologists," said David R. Repaske, Ph.D., M.D., Chief of Endocrinology, Metabolism and Diabetes at Nationwide Children's Hospital. "Be sure the team's focus is teaching the family the tricks and techniques for diabetes self-management and customizing the treatment to meet the needs of the child and the family."

"The idea of stem cells also is very exciting," Zipf said. "If we can get stem cells to turn into beta cells, they can take up residence. You still have the immune problem because type 1 diabetes is an autoimmune problem, so if you transplant the beta cells or a new stem cell line there's still a high probability they'll be attacked by the problem that started diabetes."

A so-called artificial pancreas may not be the cure, but "these pump systems connect to sensor systems that will monitor the glucose and then makes adjustments and pump insulin," Zipf said. "There are people walking around with these things now. Under FDA evaluation is a control system for nighttime management, so the sensor will monitor and adjust the pump as needed. It will keep nighttime control and protect from lows. That will be a real breakthrough for us."

Whatever the future brings, Zipf believes, "Our goal is to keep our kids as healthy as we can so that when that new treatment comes about, whatever it might be, that they come in, they get their injection of new cells or whatever, and they walk out and the diabetes was just sort of a bad dream."

Editor Staci Perkins blogs on ColumbusParent.com where she shares her everyday adventures as a single mom with four kids.

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Diabetes fast facts

  • Nearly 24 million Americans have diabetes (7.8 percent of the population):
  • Diagnosed: 17.9 million
  • Undiagnosed: 5.7 million
  • As many as 3 million Americans may have type 1 diabetes.
  • Diabetes currently affects 246 million people worldwide and is expected to affect 380 million by 2025.
  • In the U.S., a new case of diabetes is diagnosed every 30 seconds; more than 1.6 million people are diagnosed each year.

2006 Juvenile Diabetes Research Foundation International