“I first noticed him losing weight very fast, but he had been working out more than normal, attending the high school wrestling practices with his older brother,” says Nicole Tricoche of her now 14-year-old son, whose first name is withheld to protect his medical privacy. He’s a typical teenage boy, the captain of his wrestling team who does his homework nightly and is popular among friends.
“But he was always thirsty, and the amount of juice and water he was drinking was astronomical,” Tricoche says. Due to these symptoms, as well as his frequent bathroom trips and extreme exhaustion, Tricoche and her husband Issac of Brentwood, New York, decided in February that a doctor’s visit was warranted. That’s when their son was diagnosed with Type 1 diabetes.
Early adolescence is the most common period for Type 1 diabetes onset, which until recently was more commonly called juvenile diabetes. It presents with symptoms that, alone, can be easily dismissed. Though it isn’t as talked about as Type 2 diabetes, it’s more prevalent among children, and unlike Type 2 diabetes, Type 1 is an unpreventable autoimmune disease.
All Type 1 diabetics are insulin-dependent, as their immune system attacks the beta cells that produce the hormone. They rely either on injections or a pump that delivers insulin through a catheter inserted into the skin. Life with Type 1 is a daily exercise in balancing blood sugar — diabetics must avoid the dramatic lows and highs that can result in lethargy, fainting and coma in the short term, and kidney failure, amputation and even blindness over time.
Blood glucose management, through diet and insulin, is difficult for people of all ages, but presents unique difficulties for teens.
Why Teens?
Many of the same hormones triggering physiological changes in teens are associated with the emergence of Type 1 diabetes.
Dr. Lori Laffel, chief of the pediatric, adolescent and young adult section at the Joslin Diabetes Center in Boston, explains both growth hormones and sex hormones prevalent during puberty make the body less responsive to insulin. As a result, the teenage body demands more of it to manage blood sugar levels.
“In a non-diabetic, the body has an automatic way to increase insulin release in response to the demands of those growth and development hormones,” Laffel says. “But if you have failing beta cells, it becomes clinically manifest when your body is demanding more insulin.”
In other words, puberty’s hormonal changes make the lack of insulin-producing beta cells more apparent. Even children diagnosed with Type 1 diabetes before puberty experience greater difficulties managing their blood glucose throughout the hormonal changes of adolescence.
Why It’s a Challenge
In addition to physiological changes, adolescence comes with social and behavioral changes. When paired with the diagnosis of a chronic, drug-dependent disease, it can get even harder to cope.
“As an adolescent, you’re trying to emerge as someone gaining more independence in the world, and then you’re thrown into this diagnosis where you really need some help,” says Dr. Kara Harrington, a clinical psychologist at the Joslin Diabetes Center. Harrington explains it can feel “developmentally regressed” to be, on one hand, reaching for independence, and on the other, asking for help from your parents with something as seemingly basic as what to eat or when to take your medicine.
The challenge for teens is magnified when peers, whom they look to for acceptance and a sense of community, are puzzled or even judgmental about their new condition.
Parents Under Pressure
“He took it well,” says Tricoche of the diagnosis and subsequent three days her son spent in the hospital. “He wasn’t crying or upset. I, on the other hand, was a wreck. I kept thinking things like, ‘My son won’t have a normal life,’ ‘He won’t be able to wrestle,’ ‘What if my baby dies?'”
The parental response to a teen’s Type 1 diagnosis cannot be minimized. One small study published in the Journal of Pediatric Psychology found that 24 percent of mothers and 22 percent of fathers met the criteria for post-traumatic stress disorder following the diagnosis of their child. The child’s age, gender, length of hospital stay and the family’s socioeconomic status didn’t affect the symptomatology.
A teen with diabetes can handle some of the care themselves, aided by supportive guidance from their parents. But when parents are under stress, supportive guidance may sound like nagging, something that can push the teen away and prove counterproductive to his or her disease management.
Working Together
It’s the little changes in communication that can make the difference between accusatory parents with resistant teens and teamwork. Success is a balance between modeling and supportive behavior for the teen, and allowing him or her to have some control and independence.
“If the parent asks, ‘Did you check your blood sugar yet?’, and that wasn’t done, then they feel bad and feel like they failed,” says Harrington, who explains that most teens really just want to please their parents and feel good about their disease management. “But if they say, ‘In two minutes, check your blood sugar,’ there’s no way you could have failed at that.”
For the Tricoche family, teamwork comes from younger and older siblings. Nicole’s 18-year-old daughter, who has scoliosis, reminds her brother not to use his disease as a crutch; his 16-year-old brother helps keep him grounded; and his 10-year-old sister reports back to mom and dad when he skips a snack or has low blood sugar.
Facing the World
“A co-worker told me, ‘This is what kids nowadays get because parents feed their kids crap,'” says Tricoche, who admits she lashed out at people in the beginning, in defense of her son and her parenting. But now she’s realizing these misconceptions present an opportunity to educate people.
Both parents and children face these misconceptions daily. Harrington suggests everyone work to come up with a stock phrase to use in response to them. Akin to reciting a script, this phrase should become so automatic that using it doesn’t elicit an emotional reaction.
For family and friends that give unsolicited advice, a different approach may be needed. When someone asks, “Are you sure they should be eating that?” your first reaction may be defensive.
“I think these comments are sometimes an attempt to help, but they’re just missing the mark,” Harrington says. “Try saying, ‘Wow, it seems like you’re interested, but let me tell you how you can help.'”
Seeking Help
When a child faces a new diagnosis, there’s a team at his or her beck and call — at least while he or she is hospitalized. Then the family is turned loose into the world and expected to be experts at diabetes management.
For teens, it can feel like too much to handle. Diabetes burnout is a phenomena where patients simply tire of their disease and grow resistant to managing it. From the perspective of a parent, it can seem like teen rebellion when a child doesn’t want to test his or her blood sugar or count his or her carbs. But it could very well be the teen is feeling overwhelmed and doesn’t know where to turn.
Harrington suggests looking for poor blood sugar management, higher-than-normal frustration about the disease and the need for more guidance and reminders than before. When the teen is “white-knuckling” their diabetes control, she says, it’s a sign that help may be needed.
“You don’t have to have a mental health diagnosis to benefit from a psychologist’s input,” she says, adding that a mental health expert should be considered just another member of the child’s health care team. “If you’re feeling like it’s a big burden and it’s creating a lot of conflict, that could be an indication it might be helpful to have someone help you work on communication patterns and help you work together.”
Ultimately, this diagnosis will last long into adulthood, so setting your child up with a supportive foundation will help him or her with a healthy future. For the Tricoche family, thus far, the adjustment to a new diagnosis in the family has been relatively smooth, thanks in part, Nicole says, to the strength of her son.
“He’s really been through the fire,” she says, “but has come out on top and continues to do so every day.”
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Teens With Type 1 Diabetes: How to Cope and When to Seek Help originally appeared on usnews.com
