First Day of the Sixth Grade #WeAreNotWaiting

I cannot begin to express how I feel today.  My only child started middle school.  That’s enough to make any mother cry.  I actually haven’t cried.  Do you know why?  Because I know she’s okay.

Middle school can be a tough time for any adolescent (I was going to say child, but that somehow seems like the wrong noun) add in Type 1 Diabetes to further screw with things and it’s a recipe for a bad situation.  Last year I lived in constant worry about not if the school was going to call me that day but when the school would be calling me.  Last year when Angelina started school she was on her insulin pump, but didn’t yet have a CGM and we were only barely five months into learning the ups and downs of her diabetes, and only one month into learning how to use her pump to maximize it’s effectiveness.

This year I could program the pump in my sleep.  I can look at her blood sugar readings or CGM data and tell you whether she needs a basal adjustment or a carb ratio adjustment and I can tell you exactly where to change it to get the best results.  Diabetes is still unpredictable but I rarely worry anymore about things coming out of left field and not knowing what to do.  If she’s low, we give her sugar.  If she’s high we give her insulin.  If she’s still high after a couple hours I look at what she ate that might be causing it.  If I don’t suspect food (particularly fatty food, which makes her insulin resistant for hours) to be a culprit we give a shot and change a pump site and check for ketones.  If she’s sick or has to take a steroid medication I know that I am going to have to program a secondary basal program because she almost always needs more than the maximum temp basal amount allows.  If she gets stung by a wasp, I know she’s going to be high for hours and need more insulin, but not too much because then she’ll come crashing down later that day.  True story, by the way, but I didn’t panic, I knew it was okay to watch and wait.  I knew it might effect her and it might not.  When it did effect blood sugars, I took action.

This year, we have a CGM and we have been using it for 7 months.  The CGM is great for her for school because it gives clear indicators of when it’s time to visit the nurse, or if it’s okay to just chew on a glucose tab in class.  Even better for the both of us is that we have CGM in the Cloud.  We have only been using it since the middle of July and she was at home on summer vacation with me.  It did come in handy the few times I needed to run some errands and she was either sleeping or didn’t feel like going to the post office and the grocery store (I don’t blame her!) and I could keep an eye on things.

Today has proven to me how very valuable this DIY technology is though.   This morning, I saw when she hit 290 after breakfast and know that tomorrow I need to bolus her a little different and possibly change her carb ratio.  Over the summer she slept in every morning so breakfast at 8am didn’t happen and her breakfast ratio at that time was more for show.

Screenshot 2014-08-20 08.38.11I was able to see at lunchtime that she was closer to being in range and that her lunch ratio is almost spot on as she only went up about 20 points before coming back down.

And I was able to see this 30 minutes before school got out and she had to walk the half block home.

Screenshot 2014-08-20 14.33.21This is important because her CGM low threshold is set at 75.  Since the CGM reads interstitial fluid instead of blood it doesn’t always tell the same story that a fingerstick does.  She’s not actually considered low until she’s under 70 mg/dL on her meter, but when the CGM is considered accurate if it reads within 20% of the meter number that can sometimes mean that she is lower than the CGM lets on.  With this data pictured I was able to call the school nurse and ask her to call Angelina’s classroom to have her chew a glucose tab so she never actually went low.  Without the CGM in the Cloud Angelina wouldn’t have sought help until she hit that 75 reading on the CGM.

The reason behind not just setting her low threshold higher is that sometimes an 80 is a great blood sugar to have, for instance if she has a steady glucose trend, and we don’t want her treating a low that isn’t really a low because that has the potential for glucose levels running higher than necessary and causing complications down the line.  But, a 90 reading with a downwards arrow means that she may drop 30 points in 15 minutes if she doesn’t take action to correct the direction things are going.  A downwards arrow and a blood sugar under 100 means a low is imminent.  Sometimes it will resolve on it’s own, but not usually, especially if the downwards trend has been ongoing, as it was in this case.

There is a downside to the CGM in the Cloud.  At this stage it is purely experimental and totally “at your own risk”.  There isn’t a user manual and a dedicated tech support line to call.  There is a lot of knowledgeable parents and people with diabetes who have worked to develop this technology,as well as a growing community of users who are supportive and innovative in their own right and willing to share their experiences to help others.  Today the Facebook group CGM in the Cloud reached over 5,000 members.  There are people all over the world who are not waiting for the device manufacturers to come out with this technology.  They are setting it up themselves and having it today because #wearenotwaiting.

If you are a person with diabetes or a caregiver for a child with diabetes who uses a Dexcom CGM and are interested in this DIY technology please visit the Facebook page “CGM in the Cloud”  or for instructions on how to get started visit http://www.nightscout.info/

 

Edit: I am not a part of the original group of developers for CGM in the Cloud AKA Nightscout.  I also am not being compensated for my glowing review of this experimental technology.  I am simply a parent who was tired of waiting to be able to access my child’s real-time data from anywhere.  I am a parent who is benefiting greatly from this technology and whose child is benefiting, in more ways than one.

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2 thoughts on “First Day of the Sixth Grade #WeAreNotWaiting

  1. I’m glad you have this tool. Does she keep the “rig” in her backpack and then the backpack on her seat? I have been trying to picture how I would do this.

    Happy middle school to us all.

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    • She is carrying a small crossbody supply bag in addition to her backpack. It’s just large enough to fit the rig, her meter,and a tube of glucose tabs. She could also conceivably keep it in her backpack but she chose to have a separate bag since their backpacks do not go everywhere with them (like lunch). When they are in class her backpack does stay at her seat with her.

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