Our 9-year-old son Casey has been living with Type 1 diabetes (T1) for more than three years. On March 1, the day he was diagnosed near death’s door, our life changed forever. Like so many other newly-diagnosed families and individuals, we were scared and unprepared, suddenly having to navigate a frightening new world we knew nothing about. We felt so alone, grieving our lost future and desperate to know our new one. Those 1,096 days and nights were never easy, sometimes terrifying, and required countless decisions in monitoring and treating T1. Our confidence and competence slowly grew as we learned from experience, trial and error, others’ insights living with T1 and the scientific literature. Casey immediately began taking control of his condition by mastering carb counting and BG testing. Within a year he had returned to his sturdy, strong and energetic self, and proudly participated in several fundraisers for the Juvenile Diabetes Research Foundation (JDRF).
My first columns in The Hammonton Gazette chronicled the early months of our T1 journey—the grief, anxiety and crushing fatigue of caring for a child with T1, day and night, day after day. I wrote to increase public awareness of T1’s unimaginable demands, and to help others living with them to feel understood and less alone. What I never expected, but would later write about, were the many acts of kindness, caring and support soon directed to Casey and others with T1. New friendships relieved the loneliness; gratitude for such touching support helped balance our unrelenting fatigue and fear. Today, standing at the 3-year waystation in our T1 journey, I reflect back to send this message “from the future” to other travelers just starting out.
Managing T1 is a high-stakes DIY (do-it-yourself) project. Hospital staff taught us the basic mechanics of keeping BG within a healthy range: how to use a syringe, inject insulin, measure blood glucose (BG) with a hand-held glucometer, use nutrition labels to count carbohydrates and use a dosing chart to calculate units of insulin needed to cover the carbohydrates and BG level if above range. We learned the symptoms of BG being dangerously high or low. Living for years with higher than normal BG shortens your life by corroding organs body-wide, while seriously low BG can shut down your brain and body within hours. Your job is to keep BG in the safe space between that rock and hard place.
The treatment regimen the hospital sent home with us had seemed precise, but was frustratingly inexact in real life. We often had to guesstimate carb counts (many foods lack nutrition labels), struggle to pull exactly 1.5 or 2 units of insulin into our adult 30-unit syringes (insurance didn’t cover pediatric syringes) and the insulin dosing chart assigned the same dose to a wide range of carbs. Dosing charts treat all carbohydrates as interchangeable, but sugars affect BG much faster than do starches. Other nutrients, especially fats and protein, can cause BG to peak at seemingly odd (but actually predictable) times. Other factors, internal and external, unmeasurable and uncontrollable, can raise or lower BG, such as hormones, stress, temperature and type and duration of physical activity.
Moreover, when the pancreas loses its ability to produce insulin, it does more than just deprive the body of insulin; it disrupts the intricate workings of the endocrine system in ways that simply injecting insulin cannot restore, no matter how timely and accurate our measurements and calculations may be. What’s astonishing is how much we do accomplish when managing such a complex condition, and how much we can learn from our failures—our unrealized opportunities—to improve BG control. Trial and error, experimentation and experience have helped us avoid predictable problems, such as wait staff bringing Casey non-diet sodas when he’s ordered sugar-free, and Casey’s BG going too high and too low during Jiujitsu competitions.
We were thrilled when Casey finally got a continuous glucose monitor (CGM), eliminating most finger sticks and allowing us to follow his glucose readings remotely on our cell phones. He eventually got his eagerly-awaited insulin pump too, eliminating all injections. Both simplified the mechanics of managing BG, but BG levels still seemed unpredictable. We tried harder. It was disconcerting, but also illuminating, when we came across two crucial facts about the technology that had caused us sometimes to under- or overcorrect Casey’s BG, leading us to question our competence. The first fact: injected insulin takes about 20 minutes to travel to the bloodstream from where it’s injected under the skin (by hand or pump), whereas a working pancreas sends insulin directly to the bloodstream for immediate use. The second: CGMs don’t measure glucose in the blood, but in tissue under the skin. The CGM “glucose readings” actually reflect BG 20 minutes in the past. The CGM freed Casey from most finger sticks, but wasn’t telling us BG at that instant.
Since injected insulin takes about 20 minutes to affect BG, and the CGM takes another 20 minutes to register its effect, I could no longer take CGM readings at face value when attempting to control BG. The faster BG is falling or rising, the less interpretable CGM readings become. That became obvious after Casey got his diabetic alert dog, who can detect when his BG is heading toward high or low territory. Always checking the dog’s accuracy against finger stick BG readings, we found that BG readings sometimes differed by 100 points from the CGM’s lagging-indicator readings. We would never give up that technology, but we’ve learned to use it more effectively by respecting its limitations.
We have also learned the hazards of blindly trusting technology or care teams, and of not building in redundant protections and fail-safes when error can be fatal. For example, after our Dexcom CGM Follow app failed to sound an alert when Casey’s BG plunged to near coma level one night, we downloaded a backup app called Sugarmate. We have also stayed on higher alert for pump malfunctions after Casey experienced some during the night, such as the infusion site detaching from his leg or the tubing becoming occluded, both of which cut off insulin. Hard experience has likewise taught us to scrutinize and double check the instructions doctors and nurses give us: early in our journey with T1, Casey’s endocrinologist inadvertently gave us a dosing chart that had us administering him five times too much insulin after returning home. It might have killed him if a panicked nurse had not called us hours later after reviewing Casey’s chart. We’ve learned from our own mistakes too, such as not maintaining redundant protections, as we had failed to do when Casey became hypoglycemic while biking in the woods after unknowingly losing his only source of treatment.
In my experience, medical providers and institutions deal only with the medical aspects of a child’s condition and equip you with only the barest of information for managing your child’s T1. Yet T1 is a difficult disease to manage, and that job falls to you on Day One. The near-exclusive focus on the strictly medical aspects of care leaves T1 families without something else they desperately need—attention to the emotional, psychological and physical well-being of the child and their parents and siblings too. T1 is a family disease because the rigors of managing it affect the entire family. So, as T1 families have learned, they must turn to each other and to online and local communities for support and practical advice.
This is why I started advocating for people living with T1, and joining with other organizations to do so, including JDRF and the Hammonton Lions Club. Perhaps counterintuitively, it was my efforts to help other families living with T1 by fundraising and writing that enveloped my family in the mutual support communities that have benefited us so much. Most recently, people from all these communities generously helped Casey get his diabetic alert dog, Elvis. They have provided Casey a medical fail-safe and a loving companion too. We are grateful to be part of this growing network of friends and T1 families. Although we would never have chosen the T1 journey, we’ve been able to steer it toward a better future.
Lisa Seitles
Hammonton
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.