Six Things I Wish Someone Had Told Me At Type 1 Diabetes Diagnosis
One of my closest friends in the diabetes community called tonight. Her colleague's child was showing all of the "classic" signs of Type 1 diabetes, so she had done a finger stick on the child. The result was 212. We both know that is not a "normal" blood sugar, and combined with everything else we had heard, a diagnosis is likely forthcoming. She asked me to think about good advice for her colleague. Here's what I wish someone had told me when my son was diagnosed:
1) Your child can still do anything they want to do; it sometimes requires more preparation and planning. There are professional athletes, physicians, world travelers, and people who summit the highest peaks in the world with Type 1 diabetes.
2) Numbers are not good or bad; they are just information that tell you what action needs to be taken. It is especially important to TRY to remove the emotion and judgment about numbers for a lot of reasons. There are two that resonated most strongly with me: Kids whose parents are anxious about low blood sugars often wind up anxious about low blood sugars, and teens often feel angst or guilt about numbers that are "out of range" and stop being truthful with parents who are likely to have strong reactions.
3) Yes, Type 1 diabetes is a life-threatening disease. Low blood sugar can lead to seizures, coma, or death. It does NOT happen often. The body has its own protective mechanisms to combat severe hypoglycemia. Glucagon is not as scary as it seems and helps the body release its own sugar stores to help. Make sure you know how to use it and carry it with you. In three years, we have never had to use it... except small doses (referred to as “mini Glucagon”) by choice to help out in a few situations.
4) Life won’t go back to “normal” because diabetes is like a new family member. But at some point you just learn to accept crazy Uncle BrokenPancreas because he has moved right in. Most of the time he sits quietly in his room, and every once in awhile he causes a ruckus.
5) Embrace technology. While it is important to know how to manage without it for those times when it (inevitably) fails, a continuous glucose monitor (CGM) and pump are great options. When you first get a CGM you will likely watch it constantly... and over time you will learn patterns and know how to use it to anticipate what is coming. The right pump for you is the right pump for you. Don’t let anyone else tell you what to choose... or that you have to wait six months to get one. Some insurances have tricky guidelines... your endocrinology team should advocate for what is best for you. And on the topic of technology... invest in a good carb counting scale. It will save you SO much time and help you dose more accurately. Learn more about the scale we use and get a discount on it here.
6) The standard guidance to use 15 grams of carbs and wait 15 minutes is just that: standard guidance. It took three months for us to get another opinion about our struggles before our new endocrinologist told us we were over-treating low blood sugars. That was putting us on a roller coaster of low blood sugar followed by high blood sugar followed by low blood sugar followed by high blood sugar. He suggested we start with 2-4 grams. That wasn't easy to do at first because I worried about whether or not I had given "enough" to stop the drop in blood sugar. Over time, and with a CGM, I learned that one carb raised my son about 10 points. Then, based on how much insulin was "on board" I could determine a starting point for treating a low. Don't get me wrong...there are times when we need 15 grams. But there are also times when we need 2, and times when we need 30. You will learn the patterns and get it right most of the time. But sometimes you will over-treat a low blood sugar. It happens. For me personally, I'd rather have my son wind up a little bit higher than too low for too long.
When my son was diagnosed people told me that I had just joined an incredible community. As much as I'd prefer for my son to be free of Type 1, they were right. People here really stick together. I've had families leave syringes on their doorsteps for me when the pharmacy didn't get our order, offer to share supplies, watch my kiddo when I couldn't find any qualified babysitters, and listen to me cry on the phone. You are not alone, so be sure to connect with this amazing community in whatever way works for you.