Meet Our Version Of Type 1 Diabetes

Just like no two people are the same, neither are two people with Type 1 diabetes. What works for one person may or may not work for another. I'm going to share what has worked for us, and sometimes what hasn't.

I've been told that my son is an outlier among Type 1s in several ways:

1) He has an extreme insulin sensitivity. He was on diluted insulin until nearly six years of age.

2) He is extremely sensitive to carbohydrates, although that seems to be getting better with age. Until recently, one carb (e.g., one Skittle) would raise his blood sugar 10 points!

3) He requires an extended bolus for almost all foods except breakfast, including candy and fruit. For many people with diabetes, insulin doesn't work fast enough - so people pre-bolus (give insulin in advance of eating) to allow insulin to start to work before food digests. And generally speaking, they deliver insulin all at once for most foods, with the exceptions of things that are slow to digest like pizza or pasta. Over time, each person (hopefully) learns which foods digest slowly and require an extended delivery of insulin. Clearly, my son has a mismatch between insulin activity and food absorption. We have considered whether there are any gut health issues affecting digestion, but to date all labs have come back normal. So every time I deliver insulin for food, I do my best to guess at how much to administer "upfront" and over what time period to deliver the rest. I've got a complex thought process running through my head about the fat and fiber content of the meal, the volume of food, how quickly I think it will digest, what he has eaten recently, his recent and upcoming activity levels, and past experience with similar meals. Ultimately, it's just my best guess: sometimes he winds up with low blood sugar shortly after insulin dosing, and other times he winds up with high blood sugar because the insulin is playing catch-up with the food. Notice that in the image I gave 50% upfront and the remainder over 30 minutes.

4) Relatively speaking, he requires less basal insulin than average. Many people with diabetes have basal insulin (the insulin that your body requires to maintain basic functions) roughly equal to the amount they need for bolus insulin (the insulin consumed for carbohydrates). In other words, 50% of their insulin is made up of basal insulin, and the other 50% is made up of bolus insulin. My son's basal insulin is still roughly 20% of his total daily insulin usage.

5) The most striking difference seems to be the rate at which his blood sugar sometimes changes. I've watched his blood sugar drop 250 points in 30 minutes, even while we've been intervening to stop the drop. Trust me when I say I remember it like it happened yesterday. A leading endocrinologist from Stanford reassured me that my anxiety about his drops in blood sugar was warranted. He said that his blood sugar changed at a much faster rate than normal, and that it would not even be possible to induce such rapid changes with IV insulin in a clinical trial in a hospital. Some of the babysitters I have with Type 1 find managing his rapidly changing blood sugar stressful as well.

So there you have it: our diabetes. It's not better. It's not worse. It's just what it is. And we take one day at a time, sometimes even one hour at a time, doing the best we can to manage diabetes and go on with our lives.