I May Owe Him My Daughter’s Life

As a parent of a child (ok multiple children) with diabetes there are times when I have missed small hour alarms and slept through the night after some major correction bolus at bedtime only to wake in a startled panic holding my breath until I see my child breathing the next morning.

I haven’t ever met a parent of a child with diabetes that hasn’t experienced the above scenario.

Thankfully ‘dead in bed’ is not as common as we train ourselves to believe. Fear is insidious. In the early years after diagnosis we micromanage as much as we can to keep our kids safe. It is normal for us to do so. When my kids were younger I wouldn’t tell them the hours of sleep I missed to keep them safe. I still don’t tell them. Once my youngest overheard me talking about how tired I was after getting up or staying up (I can’t remember which, but I think I wrote about it a few years ago). My poor little man heard me say I was exhausted because of misbehaving diabetes and it broke his wee little heart. Then my heart broke into a bazillion little pieces.

Enter Dexcom. Even the first Dexcom CGMs were the bomb. Dexcom made my kids safer. Granted the early devices didn’t connect with bluetooth on their phones and they couldn’t share their numbers with me but it was a start. Dexcom is all about innovation and improving the lives of people and children with diabetes and by default improving my life as a parent of children with diabetes.

The most recent Dexcom device is the Dexcom G5. No longer do my kids have to carry a special receiver. Their numbers go directly to their iPhones and then the numbers are shared remotely with me on my phone. I can always know their numbers and sometimes my adult friends who use Dexcom G5 share their numbers with me too, especially if they are traveling alone and want a safety net.

So this last July while at Children With Diabetes Friends for Life my teens met other teens and had the best week ever. One of those teens became close with my oldest child and my daughter decided to share her Dexcom G5 numbers with him. That means he always knows her number and receives alerts if she is going dangerously low. At the time I thought it was sweet. I loved that she had a friend she could trust and confide in and count on.

I don’t require my kids to share their numbers with me although they do. That is to say I don’t provide consequences if they don’t share but sharing is highly encouraged.

Some teens might be concerned that sharing constant numbers with their parents would increase the “nagging” or micromanaging. I haven’t found that to be true with my kids but it is a common concern of teens with CGMs. <<<<this is important because maybe your teen won’t wear a Dexcom G5 because they don’t want a parent always watching, but what if they would wear it if say instead of a parent (or in my case in addition to) another friend received the numbers and low blood sugar alerts? That friend doesn’t have to have diabetes. It can be a Bff that doesn’t know the first thing about diabetes but would happily be a safety net for their best friend.

So anyway – my daughter shares her Dexcom numbers with this new FFL friend, who incidentally lives an entire continent away – 3000 miles. This friend would occasionally see low blood sugar alerts and text my daughter to be sure she is doing something about it. That’s cool and helpful. Less nagging from me.

A few weeks ago I went to bed with my phone on silent unknowingly.

The next morning I saw a number of notifications from Dexcom on my phone. A quick glance at my daughters Dexcom graph showed me that around 3am she had dipped below 30.

I didn’t know. I didn’t hear an alert since my phone was silenced.

The Dexcom graph showed that she was in a safe range at the time I woke up. Thank goodness but what about the middle of the night? Did she wake up and treat? Did her body release enough glucagon naturally to keep her safe?

No.

She didn’t wake up to her multiple low alarms. Her body was likely frantically pushing natural glucagon but probably not enough to keep her safe or alive.

It was her friend.

Her friend 3000 miles away heard the alarms at 3am alerting to my daughters severe low blood sugar. The Dexcom didn’t even give a number just “Low Glucose”.

This friend called my daughter no less than a dozen times until she woke up and treated the low.

This friend may have saved my daughter’s life.

Dexcom is the only CGM that allows blood sugars to be shared between devices across continents and around the world.

I may very likely owe my daughter’s life to a teenager and Dexcom.

Am I being dramatic?

Yes.

But is it warranted?

Yes.

I do not work for, get paid by, and I wasn’t asked by Dexcom to share this story.

I am sharing it because I believe in Dexcom, I believe in the power of friendships, and I believe that sometimes as parents we should consider the best ways to keep our kids safe while allowing them the freedom they so desperately desire. If your child is not enthusiastic about using a CGM that would broadcast his/her numbers 24/7 to you consider compromising by inviting them to find a friend to share with. There are also settings on the Dexcom application that your child can set which limits the visibility of numbers to those he/she shares with. For example the application can be set to hide graphs and numbers but send alerts for lows or extreme highs.

Talk to your child about using Dexcom and how it opens doors for increased freedom and peace of mind while also improving diabetes care, including less blood sugar checks.

oh – and after that event I made sure that my daughters friend had contact numbers for me in case he is unable to reach her.

It really does take a village to raise a child. Sometimes that village extends over 3000 miles.

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My daughter (blue hair) with some of her FFL including the young man who caught the low. Incidentally they are wrapped in blankets provided by Dexcom at the family movie night. Literally wrapped in the warm fuzzies Dexcom CGM provides.

 

A community United

For the love of all things – ┬ástop trying to wage war on each other.

Ok that may be a bit dramatic.

It also doesn’t apply to most of my friends.

But seriously no type of diabetes is easier or more difficult than another.

No one asks for any type of diabetes and no one causes their diabetes regardless of type.

I’m not a scientist. I’m not a medical professional. I’m a coffee drinking, Doctor Who watching, lover of all things chocolate, that has no real education in diabetes aside from raising three kids with diabetes and having hundreds of friends with various types of diabetes, but I’ve been around the block. I’ve read a bazillion (slight exaggeration for effect) articles and even watched a TED talk or two and I’ve learned that new thinking suggests that Type 2 diabetes isn’t caused by obesity, can’t be cured, and has never in the history of the universe been caused by the person inflicted with it.

I don’t need a bunch of scientific mumbo jumbo (I actually really love scientific stuff) to recognize that there are countless people who are fit, eat healthy, and exercise that are still diagnosed with Type 2 diabetes – they don’t fit what diet companies and mass media has portrayed as the stereotypically mold of people with Type 2 diabetes. Then there are huge numbers of people who are over weight, some considered obese, who have never developed diabetes. Type 2 diabetes is the ultimate post hoc fallacy. (look it up or watch The West Wing – that’s where I learned what Post Hoc Ergo Proctor Hoc means).

A number of smart people are saying that Type 2 diabetes has a genetic component. That a person who is diagnosed with type 2 diabetes was very likely experiencing insulin resistance for many years prior to a diabetes diagnosis. Insulin resistance itself causes weight gain. There for, obesity or excess weight is not the cause of diabetes, it is a symptom of an underlying condition that may have been present all the time. The added weight over taxes the pancreas which can then lead to a full diagnosis, but losing the weight, while possibly reducing the need for medications including insulin, will not cure the insulin resistance – a person with insulin resistance will always be at risk for weight gain and a re-diagnosis of diabetes – so there really is no reversing diabetes in reality.

I get that parents with young kids and many newly diagnosed people with Type 1 become exasperated by the lack of public knowledge between different types of diabetes. It is human to take the overall general ignorance personally. I know this because for a brief time after my youngest son was diagnosed I was one of them. I think had there been a petition to change the name of Type 1 diabetes to something that couldn’t be confused with Type 2 diabetes I would have signed it. After a few months I realized my anger was displaced. I wasn’t really angry at the ignorance and confusing names, I was just fucking angry at diabetes and I couldn’t take it away from my son. In my fear of being unable to do anything I thought changing the name would be something. It isn’t something and it won’t cure diabetes. Calling out one type of diabetes as ‘not a choice’ while saying the other ‘is a choice’ or can be prevented, divides a community. A community of people who all face the same complications, the same or very similar frustrations over food choices, cost of medications, inexperienced physicians, and the never-ending media clusterfuck that is diabetes education for the masses.

If you want to make a difference in how the general public understands diabetes then speak up and educate but please don’t do it at the expense of another type of diabetes. United as a community we are stronger and we need everyone in the game working toward the same goals, to end diabetes, to improve health care, to push innovation, and to stop stigmatization.

I had scribbled all these unfiltered thoughts here. Then I was reminded of a post a smarter much better looking person wrote about a year and a half ago and I was going to delete all my scribbles. She said I should still share them but I’m sharing her post below because it says more and doesn’t call science ‘mumbo jumbo’. She actually uses real numbers too.

Click HERE to read a A House Divided.