It’s Never Just a Number

Now is a really exciting time to have type 1 diabetes. I realize how absurd that sounds, but just 18 months ago we joined the diabetes world with a bag of syringes and a log book. A few months later our three year old transitioned to a pump and continuous glucose monitor (CGM). However, the data from pump and CGM were not compatible with a Mac. We found a workaround for the pump’s data through Diasend, but at the time it wasn’t approved for use in the States. Dexcom didn’t send data to anything other than the receiver. So these great tools existed, but they spoke different languages.

Thanks in large part to a vocal patient base, now a plethora of diabetes devices are working to speak the same language. The FDA is releasing products and software faster than anticipated. Just last week Dexcom G5 came out, which means a smart device can stand in for the receiver. Also, there’s the new Mac compatible software, Dexcom CLARITY. Here’s the great part: it works with Dexcom G4 and Dexcom Share. You don’t need Dexcom G5 to use Dexcom CLARITY. All you need is an account at Dexcom to download Dexcom CLARITY on your computer.

Information is power in the world of diabetes. Here’s the CGM data from the last two weeks.

Screen Shot 2015-09-07 at 10.41.36 AM

This is our best day; 74% of the readings were in range. On our best day we got a C-.

There are three common mantras in the diabetes world: numbers are just information, it’s never just a number, and keep calm and treat the number.

A few months after diagnosis, an adult friend with diabetes shared wise advice, “Never call a number good or bad. Just call it high or low.” We adopted this practice immediately, but are only now starting to see the reason.

Before programs like Diasend and Dexcom CLARITY, we looked at one number. If his meter said 70 we gave him a glucose tab or two. If his meter said 220 we corrected with an ezBG. Now we’re looking at aggregate data.

To keep our son’s blood sugar in range my husband and I have to work harder and more consistently on this than most of our daily tasks. We’re doing our best, so it’s easier to hear that he has, “significant time above the threshold from 9:50 p.m. to 12:20 a.m.” than, “those are some bad numbers.”

Right now, our best is a C-, but we have information we’re using to study for the test we’ll take in two weeks when we download the CGM’s data again. We have adjusted his basal program and decreased his bedtime snack bolus.

Here’s a question from next test:

Q. If a number is just information, what’s a gaggle of numbers?

A. Hopefully, a B-.

Henry, Beyond Type 1

The Diabetes Online Community (DOC) is growing. Beyond Type 1 was founded in “February 2015, and seeks to bring a new level of respect, understanding and support for those living with type 1 diabetes.  BT1 wants to highlight the brilliance of those fighting this disease every day while always working toward ensuring a cure is on its way” (beyondtype1.org). BT1 has a great Instagram account that shares an image and a story, just like Henry’s story.

Henry’s story on Beyond Type 1’s Instagram: I live beyond by telling my friends about my pump. I’m brave when I get site changes. When I grow up I want to be a paleontologist and look for dinosaur bones on the beach! My name is Henry and this is how I live beyond!

Caregiver Cheat Sheet

Last summer I sat on the floor outside the room while Henry was in art camp. He’d been diagnosed with T1D five months prior, and he’d been on the pump for the last two months. The camp was only one week long, so surly I could just sit on the floor and meet him for snack time and watch the Dexcom (this was pre Share), right? I sat on the floor and Henry loved art camp. However, I had ample time to contemplate the fact that until Henry is old enough for self-management, we can no longer drop Henry off at school, camp, a friend’s house, a birthday party, or even leave him with a family member, without talking about diabetes care.

When you tell someone about diabetes care, I’ve noticed three general reactions.

  1. A glazed over look appears in the eyes, then mouth, and invades the general posture of the listener. Do not leave your child with this person.
  2. The listener sort of gets it, and starts asking questions like, “You have to do that every two hours?” “You mean he can have sugar?” “So the pump doesn’t automatically know how much insulin to give him?” Leave your child with this person only after feedback loop systems are the standard of care or after you’ve had several more conversations about diabetes.
  3. Shaky hands accept the medical devices and instructions. Usually this person says something like, “I will call and text you.” Two minutes after you’re in the car, there’s a call, but you know this person can handle it.

Obviously it’s never a good idea to leave a child with diabetes with a caregiver who does not understand the basics of diabetes or is unwilling or too nervous to administer care. However, it is possible to train willing family and friends. To help our willing family members, babysitters, and preschool staff, we created a caregiver cheat sheet. The sheet covers: blood glucose range, hypo & hyper treatments, carbs for meals, Animas pump information, and Dexcom CGM information.

caregiver cheat sheet

Here’s the link to the document you can download and edit to specific person with diabetes and product information.

Link to Caregiver Cheat Sheet

Taking a Pancreas in Your Pocket to the Beach

In everyday normal life with diabetes we search for the meter-remote, a vial of test strips, new lancets, batteries, the Dexcom receiver, glucose tabs, juice, the Dexcom receiver, the phone/s to which the Dexcom Share data is downloaded. Repeat. Repeat. Repeat.

Despite being organized (the up-cycled D-Bag aside), I’ve managed to run over a Dexcom receiver in the preschool parking lot (the up-cycled D-Bag’s fault). In the frantic moments when I’m searching for a needed medical device while fixing lunch or getting ready to run an errand, I’m overwhelmed with the impossibility of replicating a human organ, which is, of course, impossible. However, thanks to technology, T1D is getting easier to manage. Pumps, continuous glucose monitors (CGMs), and hopefully closed loops systems will make management of T1D easier. We’ve certainly seen innovation since the first insulin pump in early 1970s.

model of first portable insulin pump, early 1970s

Our son is 4, so finding creative ways to carry his Animas pump, CGM receiver, and the iPod to which the data is downloaded is challenging. The challenge triples at the beach. Yesterday, the new Dexcom receiver took a *quick* dip in the kiddie pool. Now it’s spending some time in a bag of rice with an ocean view. If you’re not a member of the FB group Dexcom, consider joining this group as it offers great suggestions for using Dexcom, especially when it’s been swimming.

People with diabetes can do everything anyone else can; however, there’s more planning and worry involved. This is our first summer at the beach since diagnosis. We’re learning a lot about pumping in hot weather and conducing some experiments in regards to “waterproof” versus “water resistant.”

Our son has diabetes, but we’re lucky enough to be at the beach. We are at the beach. We are at the beach, but so is diabetes. We are at the beach.

diabetes at the beach in the foreground

diabetes at the beach in the foreground

diabetes at the beach with beach in background

diabetes at the beach with beach in background

Both are simultaneously true.