diabetes education

No Added Corn Sugar

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I’ve always read nutrition facts, but now I analyze nutrition facts because I have to depend on the the carbohydrates to determine how much of a life sustaining (or ending) drug, insulin, to give my kid. The first trip to the grocery store after our three-year-old son was diagnosed with type 1 diabetes was shocking. Our local grocery store has a nutritionist, and shortly after explaining why I was looking for certain products he said, “A grocery store’s a bad place to be if you’re diabetic.” He wasn’t saying anything I hadn’t already felt, but where else do you get food in March in the midwest?

I was at the grocery store for three hours, reading the nutrition labels for every food we typically eat. Freezing, I stood at the dairy case shaking my head at the yogurts, not because Henry couldn’t eat yogurt (he can), but because of all the added sugar in most every food we eat.

We’ve always been a family that cooks from whole ingredients, belongs to a CSA, and frequents farmer’s markets. However, we still have snack foods and sweets in our house. We’re pretty moderate— a little bit of most things, but having type 1 diabetes at our table has made our intentional choices even more intentional.

Reading nutrition labels and portioning food is a good reminder of just what and how much we should be eating.

I came across Eve O. Schaub’s memoir, Year of No Sugar. For one year, Schaub and her family of four ate only food with no added sugar. As they embarked on this year, the family had to discuss what the ground rules were and what defines no “added sugar.” Schaub was inspired to start the project after watching the amazing lecture, “Sugar: The Bitter Truth,”  by Dr. Robert Lustig, a Professor of Pediatrics, Division of Endocrinology at UCSF.

In case you don’t watch the 90 minute lecture, here’s the take away. Since the 1950s Americans are about 20 pounds heavier. We eat more sugar and carbs than we use to, and here’s the science part (45:00 into the video): fructose is metabolized in our liver in a way that’s similar to alcohol. Dr. Lusting says chronic fructose exposure results in metabolic syndrome:  obesity, lipid imbalance, and type 2 diabetes.

I know type 1 diabetes and type 2 diabetes are two separate diseases, with two separate etiologies. Type 1 is an autoimmune disease and type 2 is a disease associated with the interaction of genes and lifestyle. Since our son lives with type 1, we’ve become more aware of just how much sugar is in everything we eat. Constantly reading nutrition labels is a reminder of just what we should and shouldn’t be eating. Focusing on carbs and sugars has also shown us that  sugar is ubiquitous, so maybe it’s time to change the conversation around type 2 diabetes from one of shame and blame to one of regulation and education when it comes to the food supply in America.

Caregiver Cheat Sheet

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Last summer I sat on the floor outside the room while Henry was in art camp. He’d been diagnosed with T1D five months prior, and he’d been on the pump for the last two months. The camp was only one week long, so surly I could just sit on the floor and meet him for snack time and watch the Dexcom (this was pre Share), right? I sat on the floor and Henry loved art camp. However, I had ample time to contemplate the fact that until Henry is old enough for self-management, we can no longer drop Henry off at school, camp, a friend’s house, a birthday party, or even leave him with a family member, without talking about diabetes care.

When you tell someone about diabetes care, I’ve noticed three general reactions.

  1. A glazed over look appears in the eyes, then mouth, and invades the general posture of the listener. Do not leave your child with this person.
  2. The listener sort of gets it, and starts asking questions like, “You have to do that every two hours?” “You mean he can have sugar?” “So the pump doesn’t automatically know how much insulin to give him?” Leave your child with this person only after feedback loop systems are the standard of care or after you’ve had several more conversations about diabetes.
  3. Shaky hands accept the medical devices and instructions. Usually this person says something like, “I will call and text you.” Two minutes after you’re in the car, there’s a call, but you know this person can handle it.

Obviously it’s never a good idea to leave a child with diabetes with a caregiver who does not understand the basics of diabetes or is unwilling or too nervous to administer care. However, it is possible to train willing family and friends. To help our willing family members, babysitters, and preschool staff, we created a caregiver cheat sheet. The sheet covers: blood glucose range, hypo & hyper treatments, carbs for meals, Animas pump information, and Dexcom CGM information.

caregiver cheat sheet

Here’s the link to the document you can download and edit to specific person with diabetes and product information.

Link to Caregiver Cheat Sheet

Newly Diagnosed Reading List

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Speaking to an audience of First Timers at Friends for Life 2015 Diabetes Dad, Tom Karlya, said “Diabetes is an unfair and tough disease, but knowledge is the equalizer in diabetes.” Knowledge is the equalizer in diabetes. Between blood glucose checks every two hours, being a parent, and teaching, it took me a few months to get through these books, but the history, research, and practical advice helped me cope with our son’s diagnosis and more importantly, find good avenues of care for him.

Diabetes Rising by Dan Hurley

After I meet with another parent whose child has diabetes, one of the first pieces of advice she gave me was to order Diabetes Rising. This book is an advanced primer on the history and current research as it pertains to T1D. Divided into three main sections, the first section chronicles the history of diabetes mellitus and focuses on the alarming rate at which both type 1 and type 2 is rising. The middle section covers hypotheses about the etiology of type 1 and the last section covers various treatments and research for a cure. The author, Dan Hurley, is a reporter, and a person living with T1D. This is the book I pass along to family and friends who want to learn more about diabetes.

Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle by Thea Cooper and Arthur Ainsberg

The book swiftly moves through the history of diabetes and its lack of treatment before the modern era. I think this book is one part biography of William Banting and one part case study of Elizabeth Hughes, one of the first American patients to be given insulin after its discovery in 1921. The book covers the early experiments of Banting and Best and follows the story of insulin to the Lilly Corporation and then the Noble Prize.

Cheating Destiny: Living With America’s Biggest Epidemic by James S. Hirsch

Like Diabetes Rising, this book looks at the history of diabetes, hypotheses, and current (published in 2009) research. What makes this book differently is the deeply empathetic voice of the author, James S. Hirsch, who is a person living with T1D. The book opens with the author’s three-year-old son’s diagnosis of T1D.

Think Like a Pancreas by Gary Scheiner

Thankfully, the author, Gary Scheiner, a CDE and person living with T1D, acknowledges no one can really think like a pancreas. However, if it’s possible to even replicate one iota of what a pancreas does, it would be with the help of this book. This book covers how to establish and test basal programs, a wealth of information for counting carbs and covering with boluses, detailed nutrition information, and other elements that affect blood sugars. Sitting down with this book is like sitting down with a nutritionist and CDE for a very advanced lesson on artificial metabolism.