About 10 days after Bisi started on the pump, the four of us joined my mom for a week in Tuscany. We had a great time; how could you not? But in terms of Bisi’s diabetes, the trip was difficult. Part of the problem was that all of us were still very new to the pump, so we didn’t totally trust it. Another part was that we were eating out a lot, and the food Bisi most wanted—buttery, cheesy pasta and then gelato for dessert—is disastrous for her blood sugar, and also very different from how we normally eat at home (lots of protein and vegetables, with few starches). But part of the experience in Italy is eating lots of great pasta. And it wouldn’t have been fair (or feasible) for some of us to eat pasta while making Bisi skip it. The third part of the problem didn’t become clear until about halfway through the trip, after several calls to Bisi’s diabetes nurse educator about her crazy-high blood sugar numbers.
When we started the trip, Bisi was typically taking a total of about 2 units of insulin a day. On days when she ate lots of carbs—say, where she’d go to a birthday party and eat cake and pizza, the number was more like 4 or 5 units.
But what we found on the trip was that this amount of insulin was completely inadequate. We’d be correcting her at 10 pm, then again at 2 am, then again at 5 am, and then sometimes she’d still wake up high. With the jet lag and the multiple wake ups a night, we were exhausted. We changed her carb ratios downward each day, but throughout the trip we always felt like we were a step—or twenty—behind the diabetes. Was it the time change or the stress of travel? Bisi’s nurse educator said that both of these factors can have an effect on blood sugar. Was the pump not working? It was hard to keep on trusting this little pod on her body when her numbers seemed so out of whack. At times when she was over 250—and there were a lot of them—we would test her ketones to make sure acids weren’t building up in her blood due to lack of insulin. (A worry with the pump is that it will stop working but you won’t know it. If the pump conks out and is not giving the tiny drip of basal, or baseline, insulin that Bisi needs throughout the day, a dangerous level of acids could build up in her blood.) But her ketone levels were never over .02 (.05 is when we’ve been told to worry). She was getting insulin, just not enough to cover the carbs she was eating.
It was on this trip, though, that we experienced our first pod failure—something that I’d heard could be a problem with Omnipods. We were in Siena, and Bisi was about to have a plate of pasta for lunch. We gave her a bolus of over two units to cover about 70 carbs. Right at the end of the bolus, when she’d gotten all but the last .05 unit, the pod on Bisi’s leg started screeching: BEEEEP! We couldn’t get the pod to stop screeching—normally, you just press a couple of buttons on the pod’s controller, and the beeping stops. But this one would not shut up. Bisi and I went into the bathroom and I peeled it off her leg. I didn’t want to leave a noisy thing beeping in the bathroom (it sounds kind of like a loud timer, with a sustained high-pitched beep). So I wandered out onto a busy Siena sidestreet and surreptitiously dropped it in a trash can. We passed the can a couple more times, since it was by the town’s main square, and I could still hear the pod beeping. “It’s calling for you,” I told Bisi. “It misses me!” she said. I had images of being jailed for dropping something suspicious in a trashcan, but luckily the carabinieri were not that efficient.
It was also on this trip that we learned how accommodating Italians are about a gluten free diet. (We are still keeping Bisi on a modified gluten-free diet. We cook without gluten at home, and keep her meals gluten free when we can when we’re out; but if all of her friends are eating cake and pizza at a party, we no longer make her eat a substitute. Having T1D is hard enough, without always feeling isolated by what you’re eating.) Each grocery store had a large gluten free, or senza glutine, section at the front. And if restaurants didn’t have their own gluten free pasta, they were happily willing to cook what we brought. (Here’s a good post from Gluten-Free-Girl about Italians’ friendly attitude towards this particular dietary restriction. In general, as she points out, Italians are much more aware of celiac disease than Americans are; and all school children are tested before entering kindergarten.)
About halfway through the trip, as we struggled to keep up with Bisi’s surging blood sugar by changing her carb ratios and basal dose and by giving her extra tests and insulin corrections after meals, Bisi’s nurse told me that she thought there was something more going on than a change in diet and time zone. “I think her body’s changing. Her insulin needs are growing, and it’s just coincidental with your trip.” Essentially, her diabetes honeymoon, which had been waning for months, was officially over. By the end of the trip, Bisi was taking 11-13 units a day, and we still never felt like we achieved good blood sugar control. Once home, her basal needs came down a little bit, but her carb ratios have never gone back down to their pre-trip levels.
It’s hard to convey how stressful this feeling of never getting control over her blood sugars was, amidst all the change Bisi was going through—a new method of insulin delivery, a much higher level of carbs, a new place with a different time zone, and a different response than we were used to from her body. We’ve been to the same place in Italy several times with our kids, but this was the first time since Bisi’s diagnosis. In daily life, I’m so used to Bisi’s diabetes that it’s often not a big deal. But the contrast between this trip pre-diabetes and with diabetes was hard—the constant worry over blood sugar numbers we weren’t doing a good job of controlling; the push-pull between enjoying the delicious food there and dreading what those meals would do to Bisi’s blood sugar. I’m not sure what the answer is: Doing a better job anticipating the highs Bisi tends to have when we travel? Or letting go a bit and realizing that traveling is always going to make things more difficult diabetes-wise, but that’s okay. Probably a little bit of both. What I do know is that it’s worth doing the work to figure it out. The worry over Bisi’s health during that trip will stay with me, but so will memories of the kids biking around the walls of Lucca, climbing up towers in Siena and Florence, working on their school journals over leisurely lunches, and picking their favorite Botticelli in the Uffizi. We can’t—and we won’t—let this disease turn us away from the places we love to go and the things we love to do.
Katie – Do you have a continuous glucose monitor? The way I figured out how to control the highs was by seeing what my sugar did on a cgm. With pizza, for example, I noticed that if I gave myself 50% of the insulin upfront, my sugar would still start creeping up about 3 hours after I ate for about another 3 hours. So at about 2.5 hours, I give myself 1 unit of insulin per hour for 3 hours. Pasta is trickier for me, but I also noticed that even if I gave myself about 80% of the insulin up front,… Read more »
Vera, we now know about the extended bolus, but Bisi had just gone on the pump when we went to Italy, so we hadn’t yet learned how to do the extended. Now we have learned (though I still feel we have to perfect it–we have not yet solved the prolonged highs she gets from foods like pasta. Any advice?). Jim Healthy, we are very aware that lower carb foods require less insulin and are therefore easier for Bisi’s system to deal with; that’s how we tend to cook at home. As I pointed out in the post, part of why… Read more »
Jim Healthy – As someone who does not have T1D, you clearly are unaware of the numerous technologies that exist that allow people with T1D to maintain normal blood sugar control, even while eating high carb foods like pizza and pasta. They include continuous glucose monitors like Dexcom, Freestyle Navigator, and Medtronic’s Guardian, symlin—a synthetic analog of the hormone amylin that slows down the breakdown of sugars—and extended/wave bolus features on insulin pumps. I assure you that it is possible to eat these foods without causing spikes in blood sugar. People living with T1D can enjoy the same foods as… Read more »
Yikes “Jim Healthy”!!! You clearly state you’re not a Diabetic, nor do you have a Diabetic child. Ease up there fella. Katie and Bisi, it will get easier. I’m not sure the end of your “honeymoon” period was any help on your vacation either! I just want you to know, I am 38 years old, and I’ve had Diabetes for 30 years. I grew up as a T1D. I have a successful career, and I’m proud to say, no Diabetes complications. I eat pasta and splurge here and there. To not splurge tends to make your cravings worse, and you… Read more »
Hi Katie … Please help me understand why you are encouraging/allowing your daughter (I assume “Bisi” is your child) to consume foods that elevate her blood sugar and therefore necessitate higher doses of insulin? I assume you are trying to reduce the stigma of being a T1 diabetic and making her feel more “normal” by enjoying the same foods as everyone else. But isn’t this really doing her a great disservice? After all, she is NOT “normal” in that sense. Her body doesn’t produce the insulin required to process high GI foods, correct? So the more of these foods… Read more »
Have you tried the combo or extended bolus (I’m not sure what Omnipod calls it)? Although it requires some trial and error, it works wonders for high carb foods like pasta, pizza, and ice cream.