A Time Diabetes Bossed Us

July 23, 2016July 24, 2016 / semisweett1d / Leave a comment

Henry’s recent love of Angry Birds Star Wars on his iPod and the curvy roads back East let us know that he gets car sick. About 40 minutes into our 571 mile trip back from the beach, (which should take about 9 hours) he began to feel sick.

Car traveling jacks up Henry’s blood sugar, so to compensate, we increase his basal temporarily to deliver 80% above his normal basal rate, which usually keeps his blood sugar between 80 and 150. However, one look at his continuous glucose monitor (CGM) told me his BG was falling. I tested his blood for the glucose level and ketones. His blood sugar was 62 and he had moderate ketones. We’d entered the terrible T1D paradox of nausea. Insulin and fluids are what flush ketones out of the system, but with a low BG and a sick tummy, it’s difficult, if not impossible, to take in or keep down carbs so that insulin can be delivered.

I climbed to the back seat and canceled the temporary basal increase. I coaxed Henry to eat or drink any carb he wanted, but apple juice and Airheads made him gag. We pulled into a gas station, and after some really dramatic moments, he managed to swallow a Dramamine with some apple juice. We walked around, and I panicked purchased a number of candies that came in a gel form, a sleep pillow, and a roll of paper towels.

Within half an hour we were back on the road, two arrows up on the CGM, Henry drinking sugar free liquids, insulin delivered, and ketones gone. It took a while before he felt like eating, but when he did, we stopped at a place Henry named. When it came time to place his order, big tears welled up in his eyes, and he said he didn’t want to eat there. Normally, Henry loves mealtime, so this behavior threw us. Finally, he decided on a bowl of rice, black beans, chicken, and cheese, and we bolused for half of it.

Henry ate half, and saved the rest for later. Later arrived, and we bolused for the rest as Henry grazed in the late afternoon. I watched his blood glucose rise to 200, then 265, then 310, then 381, then HIGH (on a CGM this means it’s above 400). All the while, I rage bolused more insuiln, .5, then .75, then 1.5. I poured on the fluids. With a high blood glucose and lots of fluid, we got to visit no less than 7 gas stations (and a bucolic roadside) before dinner, which we were holding off on until his blood glucose was below 300, so the kids had an 8 p.m. dinner.

Recently, we were at the Friends for Life Conference in Orlando, FL, where the closing keynote speaker challenged the audience to think of how diabetes had enriched our lives. When presented with this question, my first thoughts were sardonic. It’s easy to think of all the negative ways that diabetes has altered my life, and most significantly and importantly, my son’s life. However, the easy type of thinking is not very useful. Diabetes is difficult, and demands a complicated response. The way I see my son is beautifully difficult. I see a five-year-old with a generous spirit, a kid who has endured more medical procedures than me, even though I’ve been alive seven times longer than he has. I imagine the courageous person he is already becoming because he has to live with type 1. Diabetes has allowed me see me son, and yes, I mean, “I see you,” in James Cameron Avatar kind of way: a great empathy that is a heart always breaking open to need and contentment.

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Super T1D in blue with blue d-bag. #bluefridays #projectbluenovember

A post shared by Semisweet (@semisweett1d) on Nov 20, 2015 at 6:39am PST

A few more gas station stops later, we were finally at our destination eleven and half hours after we started the trip. We’d blown right past bedtime, and when I tucked Henry in he said, “I don’t like diabetes.”

I said, “I don’t like it either. Why don’t you like it?”

“I don’t like diabetes because I have to wait to eat yummy candy like Airheads, and they taste delicious. It’s not fair”

Henry’s starting to realize that his diabetes makes him different. The times when he tells me that he doesn’t like diabetes are hard, and I know it’s imperative for me to be really present in these moments, but my thoughts spill out like paint splatter. Immediately, I think it was a poor decision to introduce candy as a treat for lows. I wonder how we could have been so shortsighted. I think about watching family members who are able to give their kids lemonade, crackers, juice, and candy without a second thought. I’m with Henry, it’s not fair.

“You know what, Henry,” I said. “It’s not fair, but because you have diabetes, that means we take really good care of you, and you’re going to be healthy when you grow up.”

I think about telling him that candy is like medicine for him, but think better of it. I want to keep as much of his childhood diabetes free as I can. I want candy to be just candy.

A Time We Bossed Diabetes

July 19, 2016July 22, 2016 / semisweett1d / 2 Comments

We travel a lot over the summer, and while staying with family this summer our kids saw real live commercials for the first time. And they wanted Airheads, Fruit Loops, Num Noms, and Mr. Clean Magic Erasers.

Thanks to a talk, “Hypoglycemia Prevention and Treatment” given by Gary Scheiner at Friends for Life 2016 we learned about candies that have dextrose, which are a quick rescue for lows, and Airheads just happen to be on the list. We jumped at the chance to hand over candy without consequence instead of chalky glucose tabs to treat our son’s low blood sugars.

It’s true that people with type 1 diabetes can eat anything they want to, and we don’t make foods off limits in our house. Instead we practice a little bit of all things. However, bolusing for extemporaneous juice or candy is an exercise in certain failure. Often, the carb will peak before the insulin starts to act, and the sugar burns off while the insulin is still acting, so there’s a high high, then a low.

Due to summer activity, we’ve often had to dial back basal and bolus settings. We know certain activities like the beach, swimming, or playing outside when it’s hot are likely to drive Henry’s blood sugar low. In fact, for Henry, lows can come 12 hours after activity.

With a summer of beach trips ahead, I rigged up a pretty neat way to keep Henry’s insulin and pump in good working order, and my husband bought lots of Airheads. In fact, he bought every flavor of Airhead, and even doubled up on the White Mystery flavor.

When Matt showed Henry all the Airheads ready to treat his lows, Henry said, “Give me some insulin so I can go low and try one.”

Sure enough, our second day at the beach caused a low of 62, which he felt, and uncharacteristically needed a little time from which to recover.

With each low, he bounced back, declaring what flavor of Airhead he’d try next. So far, we’ve visited Edisto Beach, SC, and St. Augustine Beach, FL, and tried an orange, cherry, and blue raspberry Airhead. Lots of summer and sugar stretches joyously ahead.

Orange Airhead, Cool Hat, St. Augustine Beach, July 2016

Semisweet Turns 1

July 17, 2016July 17, 2016 / semisweett1d / 1 Comment

A little over a week ago, I sat in the audience of a lecture, “Prevention and Treatment: From Probiotics to Immunotherapy,” given by the current president of the American Diabetes Association (ADA), Desmond Schatz, MD at the Friends for Life conference in Orlando, FL.

The talk was a speedy assessment of what is known about type 1 diabetes today, and to anyone who follows the current research, it’s no surprise that what we know is actually how much we don’t know. A few minutes into the talk, Dr. Schatz kept repeating the phrase, “a need for urgency,” as in, “There is a need for urgency for research participation” and, “There is a need for urgency for funding models to change.” Dr. Schatz then acknowledged that everyone in the room understood the need for urgency because we either had diabetes or loved someone who had diabetes.

He then gave some statistics in the talk.

In Finland, a country with one of the highest instances of T1D, 1 in 123 people has type 1.

In the United States, about 1 in 300 people has type 1.

Worldwide, new cases of type 1 diabetes double every 20 years. That’s a new urgency: an autoimmune disease with no known trigger and no known cure doubles in occurrence in a little less than a generation.

When our son was diagnosed with type 1 diabetes, with no family history, the urgency was new to us. After a while, we looked up from our life that now included carb counting, medical devices, glucagon kits, needles, pokes, and insulin, to see that the urgency is spreading like a slow avalanche.

As Semisweet closes its first year in the DOC, and opens its second, the new urgency is why we share our stories. The numbers of T1D are only growing, but now, T1D is no longer a number for us, it’s a story, it’s part of our life. Stories are advocacy.

Friends for Life Banquet 2016

Insulin Pump Meets Atlantic Ocean

July 1, 2016July 1, 2016 / semisweett1d / 2 Comments

Diabetes is often considered an invisible illness. For the first months after our son’s diagnosis, a stranger could look at our kid and not know he was living with a lifelong chronic disease. He was on multiple daily injections (MDI) and didn’t yet wear a continuous glucose monitor (CGM), so no medical devices identified as someone with a disease or disability. However, three months after his diagnosis, he started wearing an Animas insulin pump and Dexcom CGM.

In fact, unless someone knew what to look for (tubing coming from a pump, adhesive peaking below a shirtsleeve), Henry’s diabetes would be invisible to most. But when Henry swims, his diabetes becomes visible.

There are all sorts of pumps and a few CGM’s on the market, all with varying degrees of water resistance. I think the choice of insulin therapy and delivery is personal and specific to each person with diabetes. For us, the Animas pump was a good choice. It’s waterproof, and we devised a way for Henry to wear it while at the beach, so we don’t have to disconnect and manually deliver the basal a couple of times an hour. Henry’s free to play in the hot sun without us worrying about his insulin overheating or losing a pump site. However, to ensure that the site and pump are in good working order (even in salt water) we devised a pretty creative work around. It’s a bit like nesting dolls, but to us it was worth preserving the site and not interrupting Henry’s time at the beach.

Henry wears a contact detach infusion set, and we cover it with a layer of Tegaderm HP, so the site itself is protected from sand, salt, and water.
The next step was to secure the pump. We placed it in a ziploc bag, with the tubing coming out at the very edge. Then we secured the opening with gaff tape.

Opening secured with gaff tape (upper middle)

3. Next, we placed the pump in its ziploc bag in a FRIO insulin pump wallet, so that the insulin didn’t denature in the heat, and then placed the FRIO pump wallet in a SPIbelt. (I told you it’s like nesting dolls!)