Sunday, August 24, 2014

CGM in the Cloud & Now On My Watch!

People! It is here! I can see my child's blood sugar all the time!

The Nightscout Project, developed by a group of engineers and hackers with T1 or are parents of kids with Type 1 Diabetes created a way to plug a smartphone into the Dexcom receiver and have it upload to the cloud.

Now I have a website that I can keep up on my desktop, iPad, or phone that virtually mirrors my child's Dexcom readings and will alarm if my daughter is low or high.

I also can upload the info to the Pebble smartwatch, which is what you see on the left.

Now, I don't want you to think this is out of the box easy. I spent a lot of time reading posts on their CGM in the Cloud Facebook page, watched the instruction videos multiple times and spent about a week researching phones, cables and storage containers to carry the "rig."

But, it was easier than I expected. Every time I had a question, I posted on the Facebook group and got an answer, even after midnight.

At first I thought this might be a bit over the top for a teen starting high school. PERFECT for a toddler! But would she want me lurking on her like this, but after talking to her about it, we realized this could be hugely helpful. She is still a growing kid with a brain that is firing at a million times a minute. She is starting high school, in marching band, on the swim team and hardly ever is at home. So this is a win. Plus, she can view her on readings on her phone, which never leaves her hand.

The thought is that I am back up. If I see her numbers climbing sharply around 1:00 pm, I can text her, "Bolus?" to make sure she got insulin for lunch. She can then take care of it before the freight train of highs plague her all afternoon. Forgetting is a big teen problem.

So, here is a screenshot of the website on my ipad.

I'm not going to go into set up, because that is all online at Nightscout and Facebook. But here are the elements of what's needed:

  • Smartphone that can take an OTG cable
  • Specific cables for data transfer
  • Dexcom (extra receiver helpful)
  • Data plan for smartphone (most of us use for about $9/ month and share referral codes that give us $$ credit when someone uses it)
  • Optional Pebble watch, but not necessary.
  • Time

What amazes me is that an engineer and dad like John Costik, one of several founders of the Nightscout Project, made this happen for his own son. He loved the Dexcom, but not having his sons numbers available at a glance was inspiration enough to make what is becoming a very helpful tool for hundreds of T1s or parents of T1s. Six Until Me did a great interview on the process that led to us all having access to this amazing info at our fingertips.

The philosophy behind making it available to all is simply, #WeAreNotWaiting.

#WeAreNotWaiting while our endocrinologist tries to assemble the disjointed pieces of the data puzzle.
#WeAreNotWaiting for competitors to cooperate.
#WeAreNotWaiting for regulators to regulate.
#WeAreNotWaiting for device manufacturers to innovate.
#WeAreNotWaiting for payers to pay.
#WeAreNotWaiting for peace of mind that our children with type 1 diabetes are safe.
#WeAreNotWaiting to get some decent sleep for the first time in years.
#WeAreNotWaiting for our child to be able to safely have a sleepover at friend’s house.
#WeAreNotWaiting to give our child a better chance to succeed at school.
#WeAreNotWaiting for others to decide if, when, and how we access and use data from our own bodies.
#WeAreNotWaiting to build applications that focus on design and usability.
#WeAreNotWaiting to compel device makers to publish their data protocols.
#WeAreNotWaiting to insist that patients have access to their own diabetes data.
#WeAreNotWaiting to allow PWDs to have a choice in how they see their own diabetes data, and not be forced to use substandard software delivered that comes with their device.
#WeAreNotWaiting to make it easier to get data off of devices.
#WeAreNotWaiting to bring together the best and brightest minds from around the world to help make things better for PWDs.
#WeAreNotWaiting for the cure.

Tuesday, August 5, 2014

T1D Diagnosed in my Toddler 10 Years Ago Today

Happy 10 year Dia-versary to my now 13 year-old daughter and Type 2 Dia-versary to my husband.

My daughter was just three when she couldn't stop drinking or peeing and my husband decided to take her blood sugar. It said, "Hi." He didn't believe it, so he took his own. It said, "257." Clearly, the meters were broken.

He tried again with my other meter. Same results. I remember the phone call that drained the blood from my body. The wave of fear that hits like a tsunami. I almost slid under my desk.

My husband asked me when trying to get pregnant what the chances were of having a kid with T1D. I remember that conversation and confidently reporting that it was only a 7 to 10 percent chance according to my endo. Chances are a funny thing.

T1 Traveler...I Had Issues: Part II

We are at the airport in Costa Rica and my blood glucose has been running kinda high all morning. I corrected on the drive (2 1/2 hours), but we also stopped and got snacks. Waiting at the gate for the flight I see the double up arrows and realize I need an infusion set now.

I open my carryon, pull out my supply bag and guess what? No infusion set. I have everything on earth! But no infusion set. So, I quickly decide to go on Lantus. I bolus, give shots for my high BG and everything worked out ok. I still had my CGM connected, so I could monitor the results.

I didn't realize until a few years ago that your dose of Lantus is equal to your total basal rate. Worked pretty well.

So, you can always be prepared, but you also need to be prepared to be flexible!