What Caring for My Sons Has Taught Me About Diabetes

Author:
Susan B. Sloane, BS, RPh, CDE, CPT

Certainly, as a health care professional, I am well aware of the treatment protocols for patients with diabetes and the potential consequences of hyper- and hypoglycemia. Living with or caring for loved ones with diabetes offers a unique perspective into just how complex of a disease state diabetes is and how you need to prepare for just about everything.

Here are 4 lessons I have learned about diabetes while caring for my sons: sometimes you don’t know until it comes home with you!!

1. I had learned the first, most basic lesson in diabetes early on when my first son, Jason, was diagnosed with diabetes at 17 months of age. This lesson involves the basic insulin to carb ratio. My son was on a set amount of basal insulin; the bolus was difficult to determine. I had spent many hours agonizing over meal choices and the proper dose of insulin for those meals. Just when I found the right balance, everything changed. His blood sugars would erratically spike or drop without any apparent cause. This was my first introduction to diabetes—the most dynamic of chronic illnesses. Jason’s endocrinologist at the time had said it best: “Insulin is not a replacement for a pancreas;” so many other factors are involved in blood sugar control, such as stress, unforeseen activity, and so on. And so, the journey began.
2. After I understood that “insulin is not a pancreas,” I learned how unpredictable insulin could be. Sometimes it seemed as though the insulin itself, especially the basal insulins, did not behave the same all the time. There seemed to be batch-to-batch variation, and it was an added burden to think that along with other factors involved in blood sugar control, the stability of insulin products seemed to be a problem. I could never put my finger on it until recently when the stability of insulin was questioned by recent studies.¹
3. When I was first given the acceptable blood sugar range for Jason at the time of his diagnosis, I was told that in order to save his kidney and prevent blindness (among other things), we had to keep his levels in tight control (between 80-120 mg/dl). After several scary hypoglycemic incidents and one trip to the hospital where Jason suffered a seizure, we traveled to the Joslin Diabetes Center in Boston, Massachusetts, where we were told to raise Jason’s acceptable blood sugar range. It is now, of course, common practice to avoid tight blood sugar control in both the very young and the very old populations due to various developmental and cognitive issues in different patient populations.
4. There was indeed so much more to learn. I had never heard of auto-antibody testing until I saw a sign for a study taking place at the Joslin Diabetes Center. Should I or shouldn’t I get tested? I was very scared. In the end, my husband, myself, and my second son, Marc, got tested for diabetes. As it happened, Marc’s test results came back showing his antibody titer was very high for islet cells. We then knew that his pancreas, specifically the islet cells, were under attack, and we could do nothing but stand by helplessly and watch. Sure, we tried B vitamins and even made our own oral insulin capsules, but to no avail. We did know to test post-prandial blood sugars for the earliest indication of a problem and were able to treat Marc with very low doses of basal insulin from then on, which we believe extended his “honeymoon” phase.

Ahh, diabetes, you never cease to amaze me.

Susan B. Sloane, BS, RPh, CDE, CPT, has been a registered pharmacist for more than 29 years and a Certified Diabetes Educator for most of her career. Her two sons were diagnosed with diabetes, and since then, she has been dedicated to promoting wellness and optimal outcomes as a patient advocate, information expert, educator, and corporate partner.

Susan has published numerous articles on the topic of diabetes for patients and health care professionals. She has committed her career goals to helping patients with diabetes stay well through education. You can read more about her personal experiences in her book Sweet Genes: Finding a Balance Living with Diabetes.

Reference:

1. Petersen MP, Hirsch IB, Skyler JS, Ostlund RE, Cefalu WT. In response to Carter and Heinemann: Insulin concentration in vials randomly purchased in pharmacies in the United States: Considerable loss in the cold supply chain [Published online March 16, 2018]. J Diabetes Sci Technol. https://doi.org/10.1177/1932296818761972.