The Top 10 Challenges for Parents of Type 1 Diabetics

Featured Article, Growth and Development, Health and Safety

A child’s type 1 diabetes diagnosis brings with it a variety of challenges for parents. From kids sneaking candy to skipping insulin injections in an effort to just “be normal,” the trials are numerous for parents of type 1 diabetics.

According to the American Diabetes Association, more than 200,000 American children are living with juvenile diabetes, also known as type 1 diabetes. In an effort to raise awareness and ease parents’ minds during Juvenile Diabetes Month and all year long, we have solutions to 10 of the most common challenges parents of type 1 diabetics face.

Challenge 1: Party Time
Navigating the sea of candy that flows at school events and friends’ birthday parties is tough, and adhering to dietary guidelines that may preclude piñatas can be difficult for a kid. Especially since no parents wants their children to feel like the odd man out at celebrations.  But diabetes-friendly alternatives help.

“We would frequently drop off low-carb-but-still-yummy alternatives for our daughter at birthday or school parties,” says Red Maxwell, whose daughter Cassie, now 17, was diagnosed with Type 1 diabetes at 18 months old. “Often my wife would make enough for the whole class. Some of the moms would even make or bake a treat especially for Cassie.”

Challenge 2: Hurtful Questions
Kids with diabetes don’t want to stand out or be perceived as “different” during recess, on the bus or whenever peers are around. By taking a direct approach when hurtful questions are asked, children can prevent (or stop) hurtful situations from arising.

“We teamed up to bring in a diabetes educator, recommended by my son’s physician, to teach the whole class about type 1 diabetes, including issues like what it is, how it works and how it’s managed,” says Robin Wiener, a Rockville, Maryland, mom whose son Ben was diagnosed at age 11.

“The kids saw how Ben checks his blood sugar levels and how we inject the insulin shots,” Robin explains. “This teachable moment helped his teacher and classmates embrace the health challenge our family is facing. That’s made a huge difference in his ability to cope with this life-changing diagnosis.”

Challenge 3: Treatment Adherence
When kids deem their insulin pumps a fashion faux pas, it’s tough to get them to stick with their prescribed treatment plan. And too often many want to return to syringes to avoid accessorizing with a pump while risking poor control of their diabetes.

Treatment adherence often becomes problematic when children enter adolescence, says Fred Donkoh, M.D., associate director of the Department of Pediatrics, Harlem Hospital Center. “With their newly gained independence, dietary prudence may be dispensed. Even still, there should be dialogue between parent and child, and between child and their doctor.”

Through the education, Wiener says her son understands the science behind the disease, which makes adherence easier. “He can answer his own questions about why he has to do what he’s doing and understand the real consequences of what happens if he doesn’t stick to the program.”

Children should be taught to understand the nature of the illness, how diet affects blood sugar levels, how the medications work, what the dose should be, and when to administer, adds Dr. Donkoh. “Parents must oversee administration of meds while giving more independence to the child with age and sense of responsibility.”

Challenge 4: Fear of Needles
A recent study by the American Association of Diabetes Educators (AADE) says children experience more discomfort with injections than adults. And the fear of pain and/or the sight of a needle can make it tough to maintain proper insulin delivery.

“The care team at the hospital where my son was first diagnosed did a fantastic job of removing the fear factor associated with the finger pricks and insulin shots. They combined clear explanations and allowed for lots of practice,” says Weiner. Giving a stuffed animal or an orange practice shots can help kids become more comfortable with needles.

The use of new insulin injection options with smaller needles can also help to reduce pain and calm injection fears.

Challenge 5: Sleep
Any parent who has taken care of a newborn can remember sleepless nights, midnight feedings and how confused a newborn’s internal clock can get. Fortunately babies outgrow this insane schedule, but parents of kids with diabetes often must maintain the midnight insanity for safety’s sake.

“There are blood sugar checks throughout the night, every night,” says Maxwell.

Shifts helped keep things in check.

“I get the 11 p.m. and 1 or 2 a.m. check of my daughter’s blood sugar and correct it with insulin or a juice box when necessary. My wife does the early morning 5 or 6 a.m. check,” says Maxwell.

Challenge 6: Leftover Halloween Candy
Instead of being a sugar-fest, all that leftover candy hanging around from Halloween can spark a fun game of arbitrage and negotiation. “Our daughter would trade in much of her treat bag for cold, hard cash,” says Maxwell. “Snickers bars and Swedish fish used to command a quarter each, while Sweet Tarts, which taste too much like glucose tabs, only fetched a nickel.”

Like many parents of type 1 diabetics, the Maxwells kept some of the candy around the house in case of low blood sugar emergencies. “We’d treat her hypoglycemia with a Halloween treat. Talk about having your cake and eating it too!”

Challenge 7: Sustaining Energy
“Sports have been a challenge,” says Weiner, “especially for a very active 11-year-old boy with ADHD who loves to be involved in everything.”

Kids with type 1 diabetes and their parents know it’s easy for blood sugar levels to drop during exercise. So careful monitoring is key.

But so is proper nutrition.

Fred Donkoh, M.D., associate director of the Department of Pediatrics, Harlem Hospital Center suggests talking to coaches and your child about proper snacks needed to sustain energy.

“Teach them that most foods will increase blood sugar, but there are some that will cause sudden and rapid increases, which will make the condition worse.”

Dr. Donkoh says coaches, team parents and others who may offer your child a snack need to understand that juices, sodas, candies and sweet treats should be avoided. “Water, fruits and veggies are the best sports snacks,” he says. “And don’t be surprised if your child’s doctor adjusts his medicine to compensate the increased energy expenditure related to sports.”

Challenge 8: Cold and Flu Season
Getting sick is a part of childhood. But a common cold or the flu can wreak havoc on a type 1 diabetic’s blood sugar levels.

“It is strongly recommended that children with diabetes and other chronic diseases be immunized during flu season, as catching the flu can impact proper management of their condition,” says Dr. Donkoh.

And if your child does get sick whether they have had a flu shot or not, call the pediatrician. “A child’s doctor can offer advice on how to prevent dehydration and maintain proper nutrition as well as advise if a child needs to be seen in the emergency room,” says Dr. Donkoh.

Challenge 9. Maintaining Oral Health
A child’s gums can become red and inflamed when bacteria or plaque accumulates from lack of brushing, flossing or food debris removal. High blood glucose levels naturally promote the growth of bacteria associated with gingivitis and gum disease, making it imperative that kids with diabetes brush twice a day and floss daily, says Anastasia L. Turchetta, a registered dental hygienist in Kill Devil Hills, North Carolina. Maintaining healthy gums will result in managing healthy blood glucose levels for life.

But young kids or diabetics whose mouths are sensitive because of inflammation  might sidestep proper brushing and flossing.

“Parents can encourage brushing by using age-appropriate toothpaste, electric toothbrushes and brushing together,” says Turchetta. “And don’t forget to visit the dental hygienist every 6 months and share blood glucose scores and A1Cs (a 3-month blood sugar average) with your child’s dental professional. This is important for maintaining optimum oral health and managing diabetes throughout life.”

Challenge 10. Risk-Taking and Limit-Testing
Adolescents are natural risk-takers and boundary pushers. In the quest to understand where — and how — they fit into the world around them and gain independence, they may experiment with foods’ effect on blood sugar or push back when it’s time to visit the doctor for a check-up.

Maintaining honest and open lines of communication will help. And be supportive. Acknowledge that living with diabetes can be a hassle, but the day-to-day “little things,” like daily testing and not taking food risks, will lead to greater rewards down the line in high school, college or beyond.

To learn more about type 1 diabetes or get more suggestions for helping your child manage the condition, visit the website for the American Diabetes Association.

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