Living With Juvenile Diabetes Takes Time And Care

By Nancy K. Crevier

Adam Gay is an active 10-year-old Reed Intermediate School student. He skates like a madman during hockey practice, leaps for fly balls during baseball season, and likes to play a little tennis. He loves sleepovers with friends and birthday parties, like most boys his age. He gets hungry and he gets thirsty from all of that fun.

But unlike most 10-year-olds, Adam cannot let his thirst and hunger go unabated without life-threatening consequences. Adam is one of the 15,000 children diagnosed each year in the United States with type 1 (juvenile) diabetes. Due to an autoimmune response, his body does not produce insulin. Every day he must balance his food intake and exercise against his blood sugar levels, to make sure that his insulin level is in balance with his activities.

Insulin is a hormone produced by the pancreas, and is released into the bloodstream in a constant level to prevent excess glucose buildup. It regulates body metabolism, and is crucial to learning and verbal memory. When type 1 diabetes causes the body to attack and destroy the insulin-producing cells in the pancreas, synthetic insulin must be injected or infused every day to avoid dangerous reactions.

Managing type 1 diabetes is a time-consuming and sometimes frustrating experience, said Adam, who was diagnosed at the age of 5. Most of what he recalls from his prediagnosis days is unclear. “I felt weird,” said Adam. “When I was hungry, I wanted sweets. And I felt kind of unfocused, I guess,” he said.

Susan and Todd Gay, Adam’s parents, have no history of diabetes on either side of the family, so were quite surprised by Adam’s diagnosis five years ago. “Yes, he wanted sweets,” agreed Ms Gay, “but he was a little boy. What child doesn’t want cookies and candy?”

What keyed Ms Gay in to the problem was not the craving for sweets or any particularly unusual behaviors, but rather his excessive need to urinate. “I work for a medical company that sells lab equipment to analyze blood, so maybe I was a little more keen to the symptoms than someone else might have been,” she said. She also noted that Adam seemed to drink frequently, and in retrospect, she said, her son was very thin in the months prior to his diagnosis. He also complained of headaches more often than she would have expected a young child to do so.

Frequent urination, increased thirst and appetite, and weight loss are among the early symptoms of juvenile diabetes. More advanced symptoms can include drowsiness, vision changes, a fruity odor on the breath, labored breathing, and unconsciousness, according to the Juvenile Diabetes Research Foundation.

Headaches can result from a too low blood sugar level. The body wants to flush out the excess glucose, resulting in increased thirst and subsequently, increased need to urinate.

Ms Gay scheduled a visit to the doctor and concerned by the results of the blood test, the doctor sent them home to pack and head over immediately to Yale-New Haven Hospital to get Adam’s blood sugar levels under control, and immerse themselves in education about the disease that was about to change their daily lives forever.

“It was kind of boring,” recalled Adam of his two days at Yale-New Haven Hospital. “There was lots of blood testing and lots of shots,” he said.

“We had no idea what we were in for,” said Ms Gay. The amount of information thrown at them was overwhelming.

“We were concerned about not being able to manage the diabetes when we weren’t around at school, on field trips, or at sleepovers,” she said. “We had concerns around if he would be self-sufficient to manage this as he gets older.”

Education about type 1 diabetes involved food management, exercise management, and the daily process for checking and balancing blood sugar levels.

“I have to prick myself, on my hand or arm, six times every day,” said Adam. He uses a sterile lancing device in the glucose monitoring kit he carries with him everywhere he goes. The kit includes a container of double-faced paper strips, less than an inch in length and no more than a quarter inch in width, with technology embedded in-between the layers. There is also a palm-sized glucose monitor.

“I put the blood on the little strip and put it into the meter. It tells me the blood sugar level,” said Adam. “If the number is too low [normal for Adam is between 90 and 120], I probably am feeling shaky and can’t concentrate on my school work. I have to have a juice box or a carbohydrate snack right away,” he said. When his blood sugar number reads too low, he expects to have headaches.

While other boys are punching texts into their cellphones, Adam takes the number from his meter and punches it into a device that looks very much like a small cellphone. “I kind of get tired of kids asking me how come I always get to use my phone,” he said.

The device, however, is an automatic insulin pump. A thin tube runs from the delivery device loaded with a small tube of insulin and is threaded into Adam’s side through a needle catheter. The pump injects minuscule amounts of insulin at even levels all day long, unless the number Adam punches in indicates the need for a “bolus,” or quick increase of insulin, to offset high blood sugar. The pump itself is discretely clipped to his waistband, or tucked into a pocket.

“I started out having to get insulin shots. The pump is way easier,” said Adam.

The insulin pump allows for greater flexibility than shots in day-to-day activities, said his mother, especially so far as meal times and special events that involve food. If he knows he will be ingesting greater than usual amounts of carbohydrates, exercising strenuously, or not eating on time, he can easily regulate the amount of insulin pumped in to compensate.

Adam also has to be more conscious of his diet than his peers. He is aware of the carbohydrate count of nearly every food he eats, and whether they are simple or complex carbohydrates. He plans his meals, programming the pump to adjust to the amounts of carbohydrates he plans to eat. He does this after testing his blood sugar before every meal, every snack, every day.

His friends’ parents are more concerned than his friends about his condition, said Adam. “Most of my friends know I have diabetes, and they are a little curious,” he said, and jealous sometimes that he gets to leave class — but that is just if he needs to see the nurse.

“I have given the parents a mini info packet and a crash education course in diabetes, though,” said Ms Gay. “Some of the parents are more comfortable with it than others. But I need to know that someone will remind him to check his blood sugar if he gets involved in activities at someone else’s house,” she said.

As Adam grows, his insulin needs change. Fortunately, the glucose meter keeps a log of his blood sugar readings and can be hooked up to a computer. The results can then be downloaded to his clinician’s website, and they can recalculate the insulin pump.

Adam sees his doctor four times a year. It is not always convenient, he said, but his mother noted that he is probably healthier than any of his friends, because he does see the doctor so frequently. And because it is something he will do his whole life, he could end up a healthier adult, she noted, since men notoriously are lax about making doctor visits. People with diabetes are subject to other issues, including thyroid problems (which Adam is addressing), vision problems, heart and kidney disease, and circulation problems. “So it’s not really such a terrible habit to get into,” she said.

Being tuned in to the subtle signs of juvenile diabetes, the Gays are on guard with their two other sons, Eric, 7, and 4-month-old Kevin. “They say there is no connection between gestational diabetes during pregnancy, and the onset of juvenile diabetes,” said Ms Gay, but she is wary since she did have gestational diabetes when pregnant with Adam, and again with Kevin. “We have to be a lot more aware that our other kids could be diabetic. I do occasionally check Eric’s blood sugar levels,” she admitted, as well.

 A type 1 juvenile diabetes diagnosis does not have to interfere with normal activities, pointed out both Adam and his mother. Checking blood sugar levels regularly, eating a balanced, healthy diet to minimize the amount of insulin needed, and staying active can make living with type 1 diabetes manageable.

But both look forward to continuing improvements to managing the disease.

“I believe that one day there will be new technology that fine tunes his monitor, so that it is less invasive and more accurate. Maybe it will communicate with the insulin pump directly to deliver insulin automatically,” said Ms Gay.

The best discovery researchers could make, in Adam’s opinion, is an all-in-one voice command device for monitoring blood sugar and infusing insulin, that slips under the skin.

“There’s a lot of education and support out there, and a lot of research and development going on,” said Ms Gay. “Diabetes really can be controlled.”

For more information about type 1 juvenile diabetes, visit www.jdrf.org.