I want you to think about the first time you ever drove a car. You familiarized with everything around you. Your mirrors, the feel and tilt of the steering wheel, the location of the pedals. You were decently sure you knew the basics of how to move and slow the vehicle you were being trusted to learn to drive. But one of the trickiest parts of learning to drive a vehicle is that every vehicle you drive is different; especially when it comes to the gas and brake pedals. In some cars, just giving the gas a tap will accelerate quickly and lurch you forward. Same with the brakes; a gentle tap could ease the car to a slower speed or it could bring the vehicle to a standstill. Learning to drive is learning to figure out the perfect maneuvers for making the vehicle move forward without accelerating too quickly and slow down without coming to a skidding halt. Amongst all the other rules of the road, these maneuvers will almost always be the most challenging to learn in each and every vehicle you drive.
Ok, great, thanks for the Student Driver lesson… now what’s your point? My point today is that Carter’s pancreas – I’ve decided – is like learning to drive a car. For most Type One Diabetics, their pancreas’ will become like the car they use on a daily basis. They learn to manipulate the pedals to their own discretion and after driving this same car around on a consistent basis, driving the car comfortably will become second nature. They know how much gas to give for a gentle yet firm acceleration and they know how much force is required to slow down the vehicle and ease it to a stop. Same with insulin dosing. Most days, carb ratios and correction factors remain the same and they go about their day, managing their levels with these ratios as best they can. As T1 Diabetics get older, it becomes easier to dose insulin and have a consistent carb ratio because their bodies aren’t changing as rapidly or as frequently as a child with T1. It becomes second nature (though absolutely not easy) and a T1 Diabetic will become comfortable with how to keep their bodies – or cars, if you will – running most efficiently.
But Carter… oh boy where do I start with Carter? Carter is a Neonatal Monogenic Diabetic, meaning his type of Diabetes is actually pretty different from the typical Type One Diabetic. Carter’s body is absent of the typical antibodies found in a Type One Diabetes body – his pancreas just simply doesn’t produce insulin. Should it ever want to come back to life, it can. There is nothing blocking insulin producing cells like in a typical T1 body. He tested completely negative for antibodies at the time of his diagnosis, which is where the Monogenic part of his Diabetes comes into play. Carter’s type of Diabetes is extremely rare and developed from a genetic, chromosomal abnormality. There is nothing in his environment or otherwise that caused him to develop this type of Diabetes. The reason for his Diabetes is simply because while he was “in the oven”, something in the formation of his DNA went awry.
So parenting Carter’s type of Diabetes is an extreme challenge. For Carter, “driving” his pancreas will never become second nature. It is likely we won’t ever have a firm carbohydrate ratio or correction factor, even as he goes into his teenage and adult years. This is because Carter’s pancreas likes to come to life, every so often. And what’s stopping it? Again, there are no antibodies present to block the insulin producing cells. So should Carter’s pancreas want to play The Little Engine that Could… it just does! On occasion, Carter’s pancreas will give it all it has and send out insulin into his body. Of course, this combines with his basal rate running from his Omnipod pump and then any insulin on board from any recent meals/boluses and then we have a real problem; we have a huge overabundance of insulin in his system. And thus, we see him crash. Usually, over and over again before I figure out what is going on. We’ve had several days where he had no insulin on board and had the pump completely off for several hours and saw his blood glucose levels remain steady, around 110-120. One day, I watched on the Dexcom as Carter ate a full meal, completely with regular carbohydrate wheat bread, fruit and yogurt, and his blood glucose levels never budged.
It’s alarming when this happens. There’s, of course, never any warning that his pancreas is going to play The Incredible Hulk. I’m so thankful to have the Dexcom because quite literally Carter wouldn’t be with us if we didn’t have it. It has saved his life on numerous occasions but most of all, it allows me to watch when these scenarios happen. Driving Carter’s pancreas is like getting into a brand new car that I’ve never driven every single day of our lives. I have to re-familiarize myself with all the typical gadgets and figure out how this new car drives, every day. Sometimes he’ll require more insulin to stay in range; sometimes he’ll require far less than we are used to. Some days his “autopilot”, or basal rate, will be perfect and keep him coasting when he’s not eating and other days it will send him crashing. We never know and until there’s a cure, we never will.
Honeymooning, I’m sure most of you Diabetics (or parents of) are thinking. We thought the same thing… until 10 months later this was still randomly happening. For Carter, it wasn’t just a few weeks of this happening. Carter would require decently high doses of insulin and a basal rate for several weeks, and then suddenly we’d have one day where we’d have the pump completely off. Then everything would go amuck again, like at the time of his diagnosis, and we’d have the pump back on and insulin flowing in no time. But this instance would happen over and over and over again. In 10 months, this has probably happened 6-8 times and outside the typical time range for honeymooning to be occurring. These instances also don’t follow typical honeymooning agenda, per our Endocrinologist.
He leaves his endocrinologist and Diabetes Nurse Educator completely stumped when his body does this. His endo thinks it’s absolutely amazing, while his DNE doesn’t quite believe this is what is happening. Regardless of their thoughts on the matter, it happens, we have proof it’s happened and it will likely happen again. It sure messes everything up when his pancreas decides not to be lazy, for once. I’m always wishing it would make up its mind; conk out completely and stay dead or come back to the land of the living and stay that way! I have learned to handle a non-working pancreas but I don’t even know where to start with one that’s only being lazy most of the time!
I know this has been long, as I knew it would be. It’s extremely hard to document and then explain something so completely abnormal with my child. There is very little research behind Carter’s type of Diabetes and even less regarding his only-somewhat-lazy pancreas. But for the T1 community that I identify with on a daily basis, I just wanted to explain why my son is just a little different. It’s not to say his Diabetes is better or worse or easier or harder, just to highlight the differences. I’m also not blogging here tonight to suggest in the least that a Type One Diabetic has it easy at any point in their life! Most of you know I run a small shop selling Diabetes accessories and keychains to raise funds for Monogenic Diabetes Research. The Kovler Diabetes Research Foundation at the University of Chicago is the organization that works towards finding answers in the world of Monogenic Diabetes. Again, it’s extremely rare so not much research has been done regarding this type of Diabetes. But the more we can educate the world on this “other” type of Diabetes, the more funding and research can take place so that maybe one day, ALL of us will have a cure ❤
Click HERE to donate to the Kovler Diabetes Foundation for Monogenic Diabetes Research at the University of Chicago. Also, please feel free to visit my ETSY shop and see what I have to offer! 30% of all purchases are donated to the Kovler Diabetes Foundation.