A Daunting Diagnosis – Type I Diabetes Is a Difficult, but Manageable, Condition

When Dr. Kinga Pluta’s daughter was diagnosed with type I diabetes at the age of 18 months, she and her husband were in shock.
“He’s a physician, too, but everything we knew went out the window,” said the diabetologist from the Cooley Dickinson Medical Group Diabetes Center in Northampton, explaining that they were overwhelmed with emotions that included fear, guilt, and anger.
“She had just started a toddler program that she loved, and we were afraid she wouldn’t be able to continue,” Pluta continued, adding that such fears were not warranted.
Today, Pluta’s perspective has changed. Her daughter is 9 years old, is encouraged to participate in any activity she is interested in, eats a normal diet, and takes an active part in her own care, although Pluta and her husband take shifts during the night to check her blood sugar.
“It’s very easy to let the diagnosis paralyze you, but it’s really important not to send a message to your child that they will be limited in any way,” she said. “It’s why I don’t call it a disease; it’s a chronic condition, and that’s the way I refer to it when I talk to parents and children. Kids with diabetes can and should be allowed to do everything that other kids do.”
Kelly Henry agreed. “Children with type I diabetes are not disabled. They have the same capabilities as any other children,” said the registered nurse and diabetes program coordinator at Cooley Dickinson Medical Group Diabetes Center.
But when the diagnosis is made, it can seem catastrophic to parents.
“It’s scary and depressing because there is no cure, and treatment needs to last forever; although a number of studies are being done by the Juvenile Diabetes Research Foundation to cure or prevent its onset, so far nothing has been successful,” said Dr. Rushika Conroy, a pediatric endocrinologist from Baystate Medical Center. “Parents of children with type I diabetes have to count the carbohydrates in all of the food they eat, check their child’s blood sugar several times a day, and give them insulin. Treating it is complicated and a lot of work, and needs to start immediately after a diagnosis.
“And you can never take a break from it; instead of the body figuring out how much insulin to put into the bloodstream, the parent has to do it,” she went on. “There is no set plan that everyone follows, but at the bare minimum, blood-sugar levels have to be monitored when the child wakes up, before they eat, and before they go to bed. And if they are sick or the blood sugar is out of whack, it needs to be checked more often.”
Still, it’s a condition people learn to live with, and there are plenty of well-known athletes with type I diabetes. For example, NFL players Jay Cutler of the Chicago Bears and Kendall Simmons, who played with the Pittsburgh Steelers from 2002 to 2008, have type I diabetes, while Team Novo Nordisk is the first professional cycling team to be comprised completely of riders with the condition.
“Children and adults with type I diabetes can accomplish anything they choose to, as long as they make up their minds to do it,” Pluta said. “But they do need good support.”

Understanding the Condition
Conroy said type I diabetes is a condition in which the body’s immune system attacks the pancreas and slowly destroys it until it is unable to make the hormone known as insulin.
She told HCN that, when people eat sugars or starches, the body automatically breaks them down into a simple sugar called glucose, which is used for energy. But insulin is needed to get glucose from the bloodstream into the cells, so people with type I diabetes have to get their insulin through injections or a pump-delivery system, and must constantly be aware of their blood-sugar levels to prevent them from soaring too high or getting too low.
Pluta said symptoms that occur when blood sugar is too high include thirst, frequent urination, mental confusion, headaches, and vision changes. Low blood sugar can cause shakiness, mental confusion, and weakness, and lead to the child losing consciousness or having a seizure.
“There is a lot of individual fluctuation in blood sugars as kids grow, so children and their families need to be followed closely and supported,” she noted. “Diabetes education is so important, as there is ongoing learning.”
Researchers don’t know what causes the disease, although there does seem to be a genetic predisposition.
“People are at higher risk if they have a first-degree relative with an autoimmune condition, like celiac disease or hypothyroidism,” Conroy explained. “If a twin has type I, their twin has a 50{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} chance of being diagnosed with it; if it is a sibling, it’s a 5{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} to 7{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} chance; if the mother has it, there is a 4{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} chance; and if the father has it, there is 6{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} risk factor.”
Still, Pluta said that most children who are diagnosed don’t have any other family members with the condition, although she agrees there may be a family history of other autoimmune conditions.
“However, there is also some interesting seasonal variability,” she said. “Children born in the spring are slightly more likely to be diagnosed with type 1 diabetes, and most diagnoses take place in the fall or winter, which may be due to viral and other environmental effects in genetically predisposed individuals. There’s a lot we don’t understand.”
The diagnosis usually occurs when the pancreas is functioning at 0{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} to 20{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} capacity.
“It can take weeks, months, or years before it is diagnosed,” Pluta said, adding that the disease is usually identified when children are in two age groups: preschool or when they are between age 10 and their early teens. Symptoms include excessive thirst, frequent urination, and unexplained weight loss, which can vary from a few pounds to a large number.
There are two ways to treat the condition: with injections that need to be given a minimum of four to five times a day, or by administering insulin through a pump attached to the body.
Pumps have been around since the ’70s, although their popularity really didn’t begin growing for another 20 years. Data is entered into them that include the person’s blood-sugar level as well as the number of carbohydrates that will be eaten, and the pump computes how much insulin is needed. The insulin is stored in a cartridge inside the pump that is changed when it is low or empty and is administered through a tube that goes into a straw-like device that has been placed under the skin with a needle. The location of the device on the body has to be changed every few days.
Monitors are often used in conjunction with the pump. They are also hooked up to the person’s body and provide readings that show the person’s blood-glucose levels on a screen. Although they eliminate the need to lance a finger every time the person eats, that procedure must still be done at least twice a day, as blood provides a more accurate measurement of blood-sugar levels than the monitor provides.
Conroy told HCN there are two types of insulin. “One is long-acting and mimics the body’s natural production, while the other is fast-acting and mimics what happens when people eat or are under stress,” she said. “We teach parents how to figure out how much insulin is needed, which depends on the carbohydrate count of the food the child is eating, their age, and their weight.
“Two decades ago, people were required to eat at certain times of the day and couldn’t deviate from it, but now the long-lasting insulin is given once a day, and people can eat whatever and whenever they want, as long as they take enough insulin to compensate for it.”
However, it’s not always possible to determine how much a child will eat, and if they refuse to finish a meal after insulin has been administered, their blood-sugar levels will rise in response to it, so parents have to give them fruit juice or sugar tablets to compensate.
“The ideal is to give the child the insulin, then have them wait five to 10 minutes to eat. But if a parent isn’t sure how much a child will eat, they can wait until they are finished, then administer the insulin. But that method doesn’t work as well as their blood sugar is already on the way up,” Conroy noted.
Pluta said some parents are so fearful, they never teach their children to manage the condition on their own.
“But eventually they reach an age where there needs to be balance, and it’s important for children to feel as if they have some control,” she told HCN, explaining that parents can start with small things, like asking a child which finger they want lanced, or what area of their body they want their injection in.

Difficult Issues
Adolescence is a particularly difficult time for people with type I diabetes because it’s a period when teens want to rebel or break away from parental control. It’s also a time when blood-sugar levels change frequently due to rapid growth and the fact that hormones peak in mid-adolescence.
“Teens don’t want to be different than peers, but they need to be vigilant about their blood sugar and what they are eating,” Pluta said, adding that the toughest scenario is when a diagnosis takes place during adolescence.
“It’s scary because their life is completely thrown upside-down,” she explained. “All of a sudden, their routine is disrupted, and their parents are on them all of the time. They resent it, but need their help.”
Unfortunately, some adolescents who have the condition stop checking their blood sugar as often as they should. “If it’s poorly managed on a chronic basis, it can lead to kidney, eye, or neurological problems,” Conway said. “It’s a difficult illness that can wear on the patient, their parents, and their family. It’s manageable, but things like travel take a lot of advance planning.”
It can also be problematic when a child is ready to start school.
Insulin can be administered only by a school nurse in Massachusetts, but Pluta said parents frequently have to advocate for their children, and it can be a fight. She advises people who need help to call the American Diabetes Assoc. advocacy hotline.
“Parents can also request a meeting with school officials because their child will need access to snacks, the bathroom, and blood-sugar monitoring supplies at all times,” she explained. “If parents take too much of a back seat and don’t know their rights, their child may face discrimination by school administrators who simply may not be aware of the rights that kids with diabetes have.”
For example, some schools don’t allow students to leave the room during a test. But Pluta says accommodations need to be made to allow the child to have access to a bathroom or the school nurse at all times. A child’s blood-sugar level needs to be tested right before the test, and if it is out of range, it needs to come back to normal before they begin, because otherwise they may not be able to perform as well as their peers.
Due to the never-ending cycle, depression is not uncommon in parents and young people with diabetes, and Conroy said she often suggests counseling to deal with it.
Pluta also advises parents to read a book titled Diabetes Burnout by William Polonsky.
“Regardless of what age a child is, it’s a 24-7 job. There is no vacation from it, and monitoring blood sugar is something that has to be done on top of everything else the parent has to do.”
Experts also caution that it’s very important to pay equal attention to siblings. Pluta said they sometimes suffer from guilt because they are well, or suffer because the family’s focus always seems to be on the child with diabetes.

Positive Outlook
Ongoing education is critical because children grow, and their insulin requirements change. “There are so many developmental factors that affect it,” Pluta told HCN.
But over time, children and teens who are involved in their care can begin to take charge of their condition.
“Some kids learn quickly, but anyone involved in their care needs to know how to treat the diabetes,” Conroy said. “And dieticians, diabetes educators, and a whole team needs to be involved at least once a year.
But children with type I diabetes can lead a perfectly healthy lifestyle,” she went on. “I tell them they will go to high school and college and everything will be normal, except for the fact that they have to continue to treat their diabetes.”