In the days following your child’s diagnosis, the amount of information you need to learn about type 1 diabetes may feel so overwhelming that when your doctor or CDE asks what questions you have, you don’t even know where to begin. Here are some questions other D-parents say were game-changers in helping them understand and manage their child’s type 1 diabetes.
How much should we tell him about his diabetes care?
“My son was 3 years old when he was diagnosed, and that meant he was completely dependent upon my husband and me for his care. But since this is a lifelong disease, we wanted to know: When and how do we begin teaching our son about his diabetes? Our endocrinologist encouraged us from day one to think about the future when eventually our son would need to take over his own care. So from right after diagnosis, we began explaining everything we were doing (and why) while we were doing it—counting carbs, measuring insulin, giving shots, etc. And each time he had a low, we asked him to remember how he was feeling at the time. We wanted him to recognize in himself how a high or a low felt so that he could treat himself quicker. Over time, it sunk in. He’s 11 years old now and a champ at noticing changes in his own body.”
—Dena P., mom of Reid and blogger at ShotMama.com
What do we do if we keep getting “bad” numbers?
“When I asked our CDE this question, the answer I received turned out to be one of the single most important things about diabetes that I’ve ever learned. In a nutshell, the CDE’s answer was, ‘Don’t make diabetes about the numbers.’ Rather than ‘good’ or ‘bad’ blood sugars, she encouraged us to use words like, ‘Is your blood sugar high, low, or in-between?’ Children, especially young children, don’t really understand everything that’s going on with their blood sugar, but they do understand the words good and bad. I never wanted my children to think that because they had a high blood sugar, they were somehow being bad, so this advice really clicked. Today my children still refer to blood sugars as high, low, or in-between.”
—Julie D., founder of PumpWearInc.com and mom of two grown sons and a 17-year-old daughter, each of whom has type 1 diabetes
How can I keep track of all these numbers?
“When our son was first diagnosed at age 3, he was on multiple daily injections. I started out calculating carbs in foods and his doses of insulin by doing all my ‘figuring’ in a notebook, and I was always worried that I was making mistakes. At our first post-diagnosis appointment, I asked our endocrinologist whether there was something that could make this process easier. She smiled and handed me a calculator. I chuckled and thought, why yes, this would make all these calculations easier! In my sleep-deprived state in those first few weeks, the thought had never dawned on me. I bought a few cheap calculators and stashed them in the kitchen and my purse. I never had problems with the ‘math’ of diabetes after that!”
—Irene H., New Hyde Park, N.Y., mom of 16-year-old Jake
Should we cancel our plans?
“A really important piece of information I received from Caleb’s care team after diagnosis came from the social worker. Caleb was 3 at the time, and we had been planning to enroll him in a preschool program that included lunch. I was worried that diabetes would make eating a meal at school too complicated. When I asked her what we should do [whether or not to still enroll him], she replied, ‘You should do whatever you would have done if he didn’t have diabetes.’ I’ve stuck by that advice in any decision we’ve made for Caleb since!”
—Lorraine C., mom of 12-year-old Caleb and blogger at ThisIsCaleb.com
Can you help us with meal planning?
“One of the hardest adjustments at first was carb counting. At lunch, one peanut-butter-and-jelly sandwich can hit 50 carbs, before even factoring in a piece of fruit and a glass of milk! When we asked our CDE about meal planning, she helped us discover that we had many more choices than we realized. For example, we quickly learned that strawberries were a better choice than grapes for stretching out carbs, and juice was better used only for treating lows. Having a larger quantity and variety of food to choose from really helped.”
—Dayna F., mom of 15-year-old Hannah and blogger at Sciencehorse.com
Can I do this?
“The only questions I remember asking our CDE were ‘Can I do this?’ and ‘Are you going to send a nurse to the house to give my daughter her insulin? Because I can’t do this.’ She was kind and reassured me that I could.”
—Tim B., blogger at Bleedingfinger.com and dad of three children, two of whom, 10-year-old Audi and 8-year-old Riss, have type 1 diabetes
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.