3 Things you Wish your Endo had Told you!

           Surprises, surprises and more surprises. I knew from the moment we heard “diabetes” that our world was quite literally going to be turned upside down. Our 31 days in the hospital brought so much training on this new diagnosis and we tried to absorb absolutely everything. My hands trembled and my chest seized at the thought of giving shots; I’d always been terrified of needles. I practiced on fake skin and even tested my husband’s blood sugar. All these things to prepare ourselves for this new life we were going to start once we left the hospital.

          But as well all know, what the doctors and diabetes nurse educators teach us isn’t always “real life”. The suggestions are always good-intentioned and it’s good to know how we SHOULD be doing things most times, but I learned quickly post-hospital that a lot of what was taught to us just isn’t real life, most of the time. So here is a short list I have compiled regarding some “shortcuts” I wish i’d known from the get-go!

1. Dexcom (G5 and below) doesn’t neeeeed to be completely changed after 7 days. Is it a good idea to? Yes. Changing the sensor out every 7 days protects the area of the skin the sensor was on and aids in the prevention of bacteria or dirt buildup which could lead to infection. Dexcom is only FDA approved for 7 days, so anything beyond that means you’re on your own, should you choose to rely on it for accuracy or dosing purposes. But what nobody mentioned to us was the simple trick of restarting the sensor. Restarting the sensor requires another 2 hour warm up and 2 fingersticks to get it back online, but the sensor doesn’t actually get changed. Simply stop the sensor under “settings” in the Dexcom app, then tap “2 hour warmup” and it will begin the restart with the same sensor! For a good majority of the diabetic population, including my son, Dexcom is more accurate the longer it stays on a site and continues to receive twice a day calibrations. The longest we’ve gone is 2 weeks and we only changed it to check the site area and make sure there was no irritations or dirt buildup (there wasn’t, by the way!). I’ve heard others can get 3-4 weeks out of one sensor with superior accuracy! I’m not condoning a right or wrong way to do things, just something I wish I’d known in the early stages of diagnosis when I didn’t to poke my poor baby any more than necessary!
2. Presence of ketones protocol. I don’t know about you, but our DNE (Diabetes Nurse Educator) is always adamant that anything out of the ordinary should warrant a call into the urgent line at Boston Children’s Hospital. Anytime ketones presented over 1.0 we were to call into the urgent line and follow the advice of the DNE or doctor on call. However, we spent a LOT of time post-diagnosis with unusual situations and/or ketones. And every time, we spent 20-30 minutes calling in, giving our name, waiting for a call back and then spending 5 minutes introducing the DNE or doctor to my child and the situation before figuring out what to do next. We got lucky a few times and got to speak with a doctor that had met us in the hospital and remembered our (then infant) son. That made for less explaining and more discussing the course of action. However, our calls got to a point where results were advice such as “do what you did last time this happened” or “just increase xx amount and see how it goes” and I eventually put the pieces of how to handle ketones myself. So for those who are wondering, I finally figured out the course of action to follow (as a general rule) when there are ketones present in blood or urine. Anything over 1.0 (or low/trace urine ketones) means a correction should be given, plus 20%. So in our case, our correction is 0.2 so 1.0 ketones means just about 0.25 is what should be given. Moderate ketones, or anything over 2.0 would be a 30% increase. For us, we would do this via syringe because it would bring us to a bolus of about 0.275. So now, whenever I see ketones, I stick to this rule for giving a correction to get rid of them. If I have any sneaking suspicion it’s the pump, I’ll pull and replace it. If ketones get too high (over 2.5), I do call into the urgent line and ask for assistance, since I am not a medical professional. But figuring out the 20/30% increase rule became a huge help in my otherwise extremely busy life!
3. Lancet change every finger stick, every time. Wellllll … how about just… often? Again this wasn’t something I thought was up for negotiation post-hospital. In fact, my husband still gives me grief for not changing the lancet in the Genteel more often. But once I got online and see all the memes about “when was the last time you changed your lancet”, the more I realized this was another one of those rules we learned that could be bent, just a little. I still try to change the lancet daily and realistically the same one is only used for 2-3 fingersticks per day. But a little birdie tells me there’s something called “lancet change Monday” where the Diabetes Instagram community reminds each other it’s time to do a weekly lancet change. And from what I know, they’re all still alive and well, even though they don’t change their lancet every finger stick, every time.

I didn’t compile this list to tell my adoring fans that the rules SHOULD be ignored; the more on top of your diabetes care you are, the better… ALWAYS. Practicing good hygiene like cleaning the area prior to fingersticks and changing the lancet as often as possible are great ways to keep the skin and body healthy and free from dirt or bacteria. However, I wish I’d known that these three topics weren’t as serious as we initially took them to be. We spent a lot of time post-hospital stressing about changing EVERY lancet, EVERY time, and making sure the Dexcom was changed out as soon as it told us to change it. We also spent a lot of time stressing and waiting for call backs from doctors and worrying about the trace ketones. We changed our pump so often you’d have thought the prescription was for a new site every 24h, because every time we mentioned even a slight build up of ketones, we were told to pull the site. It was beyond stressful for our entire family! So maybe these three tips just might help someone else just starting their journey. Focus on the big things, not the little ones. Some “rules” about diabetes management should be taken with a grain of salt and used with your own judgement. Of course, others should be followed without any gray area (more about that later). What I’ve said here should not be used to make any medical decisions for yourself or someone else. I am not, nor have I ever been, in the medical field and any suggestions taken from this post should be used with your own judgement! ;)

What are some tips/tricks you’d share with other families just starting their journeys?

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