The Parent's Guide to Diabetes
Tips for managing your young child's health
It is a truth universally acknowledged, that parents of young children recently diagnosed with type 1 diabetes must be in want of a little clarity. In other words, if you just found out your child has diabetes and your emotions are swinging from anxiety and despair to complete confusion, don't worry. It's totally normal.
Good news for you: Plenty of parents have been through the trenches and made it out with tricks they learned along the way. (Lesson No. 1: No matter how overwhelmed you feel right now, it will get better.) Read on for sanity-saving tips from health experts and parents.
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Do This Right Now
Ease the ouch. There are very few things young children will sit still for, and blood glucose checks or insulin injections don't usually top that list. Experts and parents who have been there, done that say the process becomes a whole lot easier if you incorporate distractions, rewards, comfort, and routine.
Insulin injections were problematic for Jeff Hitchcock, the founder of ChildrenWithDiabetes.com and father of Marissa, 24, who was diagnosed with type 1 diabetes at age 2. "That became a test of who could run fastest," he says. "But kids grow out of it when they realize insulin injections are not optional." To persuade his toddler to sit still, Hitchcock would offer her a reward, such as a sticker or diabetes-friendly treat. Wendy Rose's 8-year-old daughter, Adalyne, holds a special stuffed animal whenever the infusion set on her pump is changed.
Distractions help, says Sandy Nimmo, RN, BSN, CDE, a diabetes educator at the Nebraska Medical Center Diabetes Center. So let your child read a book, play with a toy, or watch a TV show. Reserving a place in the house for checking blood glucose and injections also helps, she says, because it makes kids less fearful of getting tested randomly throughout the day.
Jaclyn Gee, MS, CCLS, a child life specialist at the Naomi Berrie Diabetes Center at New York Presbyterian/Columbia University Medical Center, suggests keeping to a routine. Young kids cry when they're checked or given insulin mainly because they don't want to sit still and want to keep playing; with today's small lancets and syringe needles, the pain is minimal, Gee adds. "As long as they know this is a new routine, they adapt," she says.
|For Parents: Tried-and-True Diabetes Care Tips|
Dose accurately. Children with diabetes require much less medication than adults, especially during the honeymoon period when their bodies still make insulin. The catch: Many syringes aren't made to handle smaller doses, but you can ask for 30-unit syringes with half-unit markings. A couple of insulin pens allow for half-unit doses, and insulin pumps allow for background and mealtime doses as low as 0.025 units. In certain cases, your doctor may also work with your pharmacist to develop a less-concentrated insulin-saline solution, says David Maahs, MD, PhD, a pediatric endocrinologist at the Barbara Davis Center for Childhood Diabetes at the University of Colorado, which can help you dose for smaller amounts of medication.
Customize treatment for lows. Problem solving is a key skill in diabetes management—one you'll put to use in figuring out what your child needs. Case in point: When a very young child is hypoglycemic (blood glucose less than 70 mg/dl), he or she may not have teeth to chew candy or a glucose tablet and might not understand how to drink through a straw. Solution: Glucose gel or cake gel to the rescue. Rose's daughter, who was diagnosed with type 1 diabetes at age 2, had frequent lows and couldn't use a straw until her blood glucose rebounded. Rose would rub cake gel on her daughter's gums until she could drink juice.
As Your Child Grows
|There are plenty of free resources for you and your growing child. Here are a few from the American Diabetes Association to get you going:|
|Diabetes camps: connecting children with diabetes and teaching them about their disease diabetes.org/camps|
|Safe at School: information on your child's rights at school and how to prepare the school to care for your child
|Message boards: a place to chat with others who have diabetes or are the parents of children with diabetes
The amount of carbs a child needs to treat a low is also up for debate. While the beginning guideline for children and adults is 15 grams of glucose or carbohydrate to raise blood glucose to a safe level, that amount may be too much for babies. Andi Smith says 15 grams is still too high for her 4-year-old son, William, who was diagnosed with type 1 diabetes at 13 months. "If we give him 15 grams [of carbs], then we'd have to give him insulin and we'd end up with a yo-yo [situation]." It will take some trial and error to arrive at the right number of glucose or carbohydrate grams for your young child, but err on the side of more carbs to begin.
Enlist food favorites. After dosing rapid-acting insulin, it's important to eat some food containing carbohydrate, but fussy eaters may refuse. Rose's solution: Find a food item with the number of carbs your child is supposed to eat per meal, and make sure you have it at the ready. When her daughter Adalyne turned her nose up at lunch or dinner, Rose would whip up a serving of oatmeal with about 30 grams of carbs.
Set your alarm. Prepare to check your child's blood glucose during the middle of the night (2 to 3 a.m.) as you adjust overnight insulin, to catch or prevent any hypoglycemic episodes and to log patterns. Overnight checks are also important if your child is ill or physically active in the afternoon or evening. While there's nothing you can do to prevent exhaustion from those interrupted nights, there are steps you can take to make the process easier. For starters, buy a headlamp, says Rose. It left her hands free for testing her daughter's blood glucose in the dark.
Many children, including those of the parents interviewed for this article, sleep right through nighttime checks. You will have to wake them, however, if their blood glucose dips too low. In that case, it helps to have a quickly digested source of glucose, such as glucose gel or juice, nearby.
Check blood ketones. On sick days (even with normal or only slightly elevated glucose levels) or when blood glucose gets too high—usually over 250 mg/dl—you'll need to check your child for ketones. They are waste products that build up when there's not enough insulin available in the body. Left unchecked, high levels of ketones can lead to diabetic ketoacidosis and even death. Most people with type 1 diabetes check ketones using a simple urine test, but the process is a bit more difficult for babies and toddlers who haven't been potty trained. Talk with your provider about blood ketone tests that work similarly to blood glucose meters. But keep in mind, they're less commonly prescribed than urine ketone test kits and may not be covered under your insurance.
Do This Very Soon
Inject with less pain. Most diabetes experts will tell you that needles today are tiny, and that's true—they've shrunk considerably since the advent of insulin. But that doesn't mean shots are always painless. That said, there are steps you can take to make an insulin injection inflict as little pain as possible. Many parents rely on ice for injections. Numbing gel (available over the counter or by prescription) is a good option for insulin pump infusion set insertions, but it can take up to an hour to work.
If your child is complaining about the pain of an injection, first consider your technique. Are you using room-temperature insulin? Injections hurt more when insulin is cold. Open vials or pens at room temperature can be used for 30 days. Cold insulin will also result in more air bubbles, increasing pain. (And you lose insulin to the air bubbles, a significant amount when it comes to child-sized doses.) Are you quickly poking the needle through the skin and keeping the barrel steady? When the tip of the needle rests on top of the skin, the nerves become irritated and pain is magnified.
The type of insulins you use may matter, too. Insulin glargine (Lantus) has a tendency to sting because of the preservatives in it. If it's causing your child enough of a problem, talk with your endocrinologist, says Maahs, because he or she may prescribe insulin detemir (Levemir) instead.
Let 'em play. Gee encourages the kids she works with to participate in what she calls medical play. If your hospital doesn't offer the activity, guide your kids through it at home by teaching them to give mock blood glucose tests and insulin injections (just make sure the syringe is empty and the needle is removed) to their stuffed animals. Even using a lancing device on a doll or toy can help kids see there's nothing to fear.
Type 1 Prevention
|The Type 1 Diabetes TrialNet Pathway to Prevention Study screens family members to determine if they are at risk for type 1 and eligible for a prevention trial. diabetestrialnet.org|
Get rid of the guilt. True, a diabetes diagnosis requires you cram a semester's worth of knowledge into just a few days, but for most parents, studying up on the how-tos of diabetes management isn't the biggest source of stress. That's reserved for feeling guilty about testing their little one's blood glucose and giving insulin injections. "When you're pricking her finger, she just doesn't understand," says Red Maxwell, whose daughter Cassie, now 16, was diagnosed with type 1 diabetes at 18 months old. "That can be really traumatizing for a parent because you're hurting your child—the opposite of your instincts."
The key to shaking off the guilt, says Gee, is to change the way you view testing and injections. "In the first two weeks," says Rose, "[my daughter] was very resistant to it, and it often took two of us to check her blood sugar, one of us to restrain her and one of us to test her. I had to separate it in my mind that every shot I was giving her was prolonging her life."
Don't sugarcoat it. Explaining diabetes and the impact it will have on your child's life isn't an easy conversation for parents, but it's necessary. For young children, keep the story simple: They need this medicine to make them better. Be sure to balance the seriousness of the disease with hope. "Type 1 diabetes requires meticulous care, but people with type 1 diabetes do very well," says Maahs. He tells his pediatric patients about famous people with diabetes to underscore the fact that diabetes isn't limiting. And kids may believe they're responsible for their disease, so it's important to reassure them that diabetes is not their fault.
As kids age, it's vital you continue to inform them about their disease. "Be honest and truthful about things with the older kids," says Gee. "Say, 'You know, this isn't going to be easy. Sometimes this is going to be hard, but we're going to stick together and we're going to get through it.'"
Give feedback on the plan. Checking blood glucose levels, injecting insulin, carbohydrate counting, and treating highs and lows as your doctor ordered are the main goals directly after your child is diagnosed. But the starting treatment plan is just a guideline. While doctors have formulas that predict the best insulin dose and carbohydrate allotment for people with diabetes, getting it just right is a process that requires frequent discussions with your health care provider. "It's a lot of communication, especially with a new diagnosis during the first few months," says Nimmo. "It's a lot of work. It's a process. But it can all be worked through."
Do This In the Near Future
Do your research. Newly diagnosed kids usually spend several months receiving insulin injections before their doctor will consider putting them on an insulin pump, but you don't have to wait that long to learn your options. The major differences between shots and a pump (besides cost and the number of pokes): Your child will have more flexibility—without extra shots—in when and what to eat, you can enter formulas to dose insulin with greater precision and less math, and there's less risk of hypoglycemia.
Involve the whole family. Regardless of who is diagnosed, diabetes will affect your entire family—as it should. "It's really important for everyone to be on board," says Gee. Your young child's siblings might not need to play an integral role in day-to-day diabetes care, but it's important they understand the disease, respect any dietary changes the family needs to make, and can help their sibling in an emergency.
Because the disease can be isolating, it helps if family members experience some of the scarier aspects of diabetes alongside the child. "If there are other siblings, let them [test their blood glucose], too, so they know what the child is going through," says Barbara Maslaney, RN, BSN, CDE, a diabetes educator at Seattle Children's Hospital. Maslaney says having her siblings experience blood glucose testing was important for her as a young child with type 1 diabetes.
Support each other. Dealing with your child's diabetes diagnosis can be an emotional drain, but it's easier to handle when your partner or another loved one is carrying some of the load. When things get hard, remember that you're on the same team. Maxwell says the diagnosis is a challenging event, but it can also bring families closer.
Join the community. Diabetes can be a lonely disease if you let it. But there are plenty of ways to connect with other parents of children with diabetes, whether it's through a support group at your hospital or an online forum like ChildrenWithDiabetes.com or the American Diabetes Association's The Place for Parents (diabetes.org/messageboards). "The number of questions that arise can be so overwhelming," says Maxwell, who started Juvenation.org, a type 1 community created by the Juvenile Diabetes Research Foundation. "The most helpful thing was being able to reach out to others, even if it was just confirmation that we did the right thing."
Take a deep breath. Don't worry if you're completely overwhelmed or feel as if you'll never figure this diabetes thing out. Keep contact with your provider, who has many resources for you and your family, ranging from support groups to mental health specialists. Even the most knowledgeable parents of kids with diabetes struggled in the beginning. "If you feel like you're going through a million different emotions, from elation to grief, you're not crazy," says Rose. The good news? It gets easier. "Right now it seems like you're not making any progress in knowing what's going on, but in a week you'll see the baby steps you've taken," says Gee.
Most of all, know that diabetes doesn't have to control your life. "There is life besides diabetes," says Nimmo. "You can get past it, and you can get through this."