Colby Ferris recalls being diagnosed with diabetes at age 4.
“I remember that I was in the hospital, and I told my mom that I was fine and not to worry so much,” said Colby, now 11, who was diagnosed with type 1.
It’s hard for parents not to worry. Diabetes type 1, formerly called juvenile diabetes, is a life-changing event and can be particularly difficult to manage with children in their tweens and teens.
“The issue is that it’s with them 24/7. Everything you eat, everything you do, all your stresses, all can impact your diabetes,” said Dr. Jay Skyler, associate director of the Diabetes Research Institute at U-Health, University of Miami Health System.
“When a child is diagnosed with diabetes type 1 and all of a sudden requires medication, life as it previously existed no longer exists. There’s no going back,” said Dr. David M. Rube, medical director for child and adolescent psychiatry at Joe DiMaggio Children’s Hospital, part of Memorial Healthcare System in Broward.
Sabrina Gallo, Colby’s mom, agrees that type 1 diabetes is a life-altering disease — not only for the child but the parents. Only 5 to 10 percent of people with diabetes have type 1, an autoimmune disease in which the immune system destroys the cells that produce insulin. Children with type 1 have to take insulin daily to live.
Gallo frequently has to check Colby’s glucose monitor to make sure his insulin level is not too high or too low. Colby also wears an insulin pump, which enables him to go about his daily activities without a regimen of shots.
“I’m really worried about the lows, because he can go unconscious in a matter of minutes. With the highs, it’s the long-term effects that can be damaging,” Gallo said.
Gallo, who is on the board of the Florida region of the Diabetes Research Institute Foundation, and Colby often talk to newly diagnosed patients and their parents. “I think it helps him to know other people have it and he can talk to them,” Gallo said.
Colby, a sixth-grader at Ponce de Leon Middle School in Coral Gables, plays basketball and baseball and for the most part, tries to lead a normal life.
“Giving shots, wearing a pump: that, you get over,” said Della Matheson, education director for the DRI. “The real burden is all of that decision-making that surrounds things that everyone else takes for granted every day. Where is my blood sugar now and what kind of stress am I under right now? And does that make my blood sugar go up or down and what type of activity am I doing and what does that do to my blood sugar?” Matheson explained.
“As you can imagine, your 12-, 13-, 14-year-old can’t come up with an answer,” Matheson said.
At the same time, adolescents need double or triple the amount of insulin than what is required by adults or younger children. There’s a tendency to think kids are not being responsible when in reality they might just be in poor control of their diabetes, Matheson said.
It’s sometimes quite the tightrope for parents to walk.
Yet Emily Young, who was diagnosed in high school, believes it’s important for tweens and teens to learn how to manage their diabetes themselves.
“If you rely on having someone tell you what to do all the time, you’re not going to be able to function” when you grow up. “Alongside my family, I need to know how to take care of myself,” Young said.
“It’s like going to school. Just take the time to figure things out and take care of yourself,” she said. “Everything you do as a child will have an impact on you as an adult,” Young added.
Unfortunately, “the warnings of severe medical complications don’t seem to have the same impact as they would for an adult,” Rube, the child psychiatrist, said of his teenage diabetic patients.
“They live in the present,” Rube said, adding that four years ahead, say getting admitted to get into college, is about as far ahead as adolescents think. “It’s not until they’re in college that they develop the ability to think about 10, 15 and 20 years into the future,” Rube said.
Meanwhile parents have to figure out a way to get their teens to follow their medically necessary regimen without biting their heads off, Rube said.
If the parents encounter persistent noncompliance, or sense their teen is depressed or has extreme anxiety, they should seek help, Rube advised.
“Sometimes,” he said, “it could be more subtle mood changes or somatic issues like headaches, abdominal pain or shortness of breath. The important thing is, if you see something, say something,” Rube said.
Omayra Hernandez, whose daughter Ana Luna, 10, was diagnosed with diabetes type 1 last year, has learned to be attuned to Ana’s mood swings.
“Whenever she’s down, I tell her to check her blood sugar,” Hernandez said. Conversely, when Ana acts “kind of hyper,” usually her blood sugar level is too high.
When Ana appears down, Hernandez will say, “Why don’t you tell me something good that happened in school today.” Then after they talk awhile, everything changes, Ana’s glucose level rises and Hernandez sees “that beautiful smile.”
“I never stop learning about my daughter’s condition,” added Hernandez, who credits Awilda Valdes, the diabetes nurse/clinician at Nicklaus Children’s Hospital, with helping her family adjust to and deal with their new reality.
“She has helped us out emotionally, took us step by step,” Hernandez says of Valdes.
Families that are very good at coping and have good communication tend to have the most success with helping their children manage their diabetes, Matheson said. “The more knowledge you have, the better you can problem solve.”
Meanwhile, teens need to learn the subtleties of their disease and how various foods, moods and activities affect their blood sugar levels.
As Skyler, the DRI associate director, said, “The only one who’s there 24/7, 365 is the person who has the disease. You have to learn how to let yourself manage the disease instead of the disease managing you.”
“You’re not different, you just have to take a couple of steps more each day than other people do,” said Young, now 26 and involved in a study at the Diabetes Research Insitute.
Managing A Child’s Diabetes
The Diabetes Research Institute offers several intensive, interactive classes at the University of Miami School of Medicine for teens with diabetes type 1.
April 10-11, 2017: A Guide to Survival in College and Beyond
June 23-26, 2017: Only for children and teens
Aug. 11-14, 2017: Only for children and teens
Classes are filled on a first-come, first-served basis. For more information and to see if your insurance covers the classes, call 305-243-3696 or go to www.diabetesresearch.org/diabetes-management-classes.