Helping Kids Transition to Diabetes Independence

As young people start driving, going out with friends, and doing more after-school activities, they need to begin taking responsibility for their own diabetes care. 

“As we grow up, our parents aren’t always around; we have new friends, new adventures, and new experiences. Diabetes sometimes takes a back seat, but we always want to be safe,” says diabetes educator Mary Farkouh, BSN, RN, RNC-NIC, who works with families at the Naomi Berrie Diabetes Center and its Diabetes Transition Program.  

Here, Mary answers common questions that young people and their parents have about transitioning to diabetes independence: 

Q: What are the first steps in helping kids make this transition? 

Diabetes is a self-management disease, and I teach my pediatric patients that independence is the goal. However, getting to a place where decisions can be made without mom or dad is a very gradual process. When parents recognize their child wants to be more independent, I encourage them to start small and make decisions as a team. The first steps include educating and involving the child in tasks like carbohydrate counting and insulin pump site changes. As the child feels more confident with their care, I tell parents they can take a step back. By involving children early on, parents help ensure their kids are ready for many diabetes-related responsibilities by the time they’re old enough for college.   

Q: At what age should this transition start? 

Parents usually notice their child wants more independence around 11, 12, or 13. But the exact timing can vary a lot. I have 20-year-old patients who still want their parents to come to appointments, and I see nothing wrong with that. Living successfully with diabetes takes support and teamwork, no matter how old you are.  

Q: What should young patients get in the habit of having on hand? 

Many of my patients don’t want to carry everything all the time. Often, I say it depends on where you are going, and how far from home you will be. However, certain things are non-negotiable: at the very least, you must always carry insulin, a syringe or pen, and low blood sugar treatments. In addition, if you can, I advise having extra supplies in case of a pump site failure or an issue with a continuous glucose monitor. For patients who don’t have a phone, keep an index card on hand with important phone numbers in case of an emergency. It is also essential that emergency personnel can quickly identify that you have type 1 diabetes.  

Q: What should patients do when they get a cold or flu?  

Although we’re working towards independence, a young patient who’s feeling sick shouldn’t try to manage it alone! Depending on the situation, call your parents, tell a friend, and call your provider immediately. Sickness includes nausea, stomach pain, vomiting, diarrhea, high blood glucose with moderate to high/large ketones, fever over 100.4 degrees F, and shortness of breath. When you’re sick, continue taking your insulin, even if you are not eating. Make sure to keep hydrated, check your blood sugar every two to three hours, give corrections for elevated blood sugars, and check ketones. If you can’t keep fluids down, be prepared to go to a hospital for treatment. In case of illness, make sure you’re always stocked up on easy-to-eat foods, like sugar-free Jell-o, chicken broth, crackers, carbohydrate-containing beverages like Gatorade (for low blood sugar), and diet drinks (for high blood sugar).