If your child has recently been diagnosed with type 1 diabetes, your family will have a learning curve as you get the hang of proper care and a new routine.
Your lives will change, but in time you'll get more comfortable with this "new normal."
As you make adjustments, you can take comfort in knowing this autoimmune disease doesn’t have to limit your child. "Kids with diabetes can do everything other kids can do," says Andrea Petersen Hulke of the Juvenile Diabetes Research Foundation.
Hospitals offer educational courses that can give your family and caregivers the insight needed to help manage this new situation.
The main change is learning to frequently check and adjust blood glucose levels (also called "blood sugar"). It may need checking 10 to 12 times a day. How much insulin your child needs will depend on the timing of meals, the types of food eaten, and her activity levels.
It can take a bit of math skill to keep blood sugar levels within a healthy range. But it will get easier with practice. Even if you make a mistake, once you learn the symptoms of how your child reacts when her levels are too low or high, you’ll know how to fix it.
"The math was freaky at first, but there are so many tools to help," says Lisa Sterling, who found out her daughter (now 17) had type 1 when she was 11. Logs, meters, and online trackers will help you stay on top of things.
Insulin can be given by shots (syringe or pen) or by pump. Doctors often start with shots while families learn the basics. A pump is a small computer that gives a steady dose of insulin. You still need to track blood sugar levels to help the pump work right. You, your doctor, and child will decide together which device your child should use.
"The goal is to manage diabetes around your child's life,” not the other way around, says Jane Chiang, MD, of the American Diabetes Association.
Despite what you may have heard, people with type 1 can eat what they want. Sweets are fine, but they need to be tracked. "It's not about restricting, it's about counting," says Hulke.
Ditto with sports. Kids can play -- they just need to check blood sugar levels before and after. Bring snacks along at all times "just in case." It's a good way to help keep ranges normal.
And with the exception of check-ups, kids with type 1 don’t miss school more often than other kids.
The key is stable diabetes control. "Kids with type-1 diabetes should be allowed to live a normal life," says Chiang. That includes parties, sleepovers, trick or treating, school trips, and sports, she says. Special attention should be given to days when your child is sick, as blood sugar levels may change more dramatically.
When your child is going to be away from you, plan ahead for greater peace of mind. Your child should wear a medical alert bracelet or necklace at all times. Make sure caregivers know the basics of diabetes care. Have a plan that teachers, coaches, friends' parents, and others in charge of your child know. Mom Lisa Sterling gave each a notebook of how-tos and symptoms to watch for.
"Diabetes camps" for kids with type 1 can be great practice for longer trips away from home. They have trained health staff on hand, and they let your child spend time with other kids with the same condition. They can compare notes and have a chance to feel less "different."
The Transition to Self-Care
Much depends on what age your child is diagnosed with type 1. Those who find out when they are very young may be ready to check and track their own blood sugar by grade school. Others may need more help. It takes time to learn the routine and to become aware of how your body feels when blood sugar is too high or too low.
There's no fixed age to manage diabetes without help. "Even a teen can't do it all without a parent's support, like sharing care at night or on sick days," says Chiang.
The basic idea is to slowly involve your child more and more in food choices, tracking, listening to their body, and other parts of care. That's good prep for the day she moves out of the house.
Adolescence is a trying time for any teenager. Rebelliousness happens. And when your child has type 1 diabetes, that may come in the form of not taking good care of their disease.
"Teens don't like control and often slack off on care," says Hulke. "But this disease is all about control."
It’s not uncommon for kids with stable blood sugar levels through childhood to run into trouble in the teen years. With extra TLC, watching, and patience, most do fine.
Care at College
One day your child will move out of the house. It helps to create a "transition plan" with your doctor (like finding a new doctor in advance).
"It's like driving. Yes, teens have a greater chance of accidents. But when you're aware of this, you're more cautious," says Chiang. "And with practice it gets easier."