Exam season and looping, what a difference DIYAPS makes

It’s 6:30am and I’m awake now for the day, but I wasn’t woken up by any CGM remote monitoring alarms, nor clock alarms because I need to check Amy’s glucose levels, no, I’m just awake because it’s time to get ready for work.

Reflecting back to two years ago when I wrote The Nightscout and GCSE Game Plan it’s amazing what a change using a DIY closed-loop artificial pancreas system (DIYAPS) makes to all our lives. Amy’s currently using AndroidAPS, Dexcom G5 CGM and a DanaRS insulin pump.

Let’s do a comparison

Two years ago using only Nightscout remote monitoring I would set an alarm on each exam day around 5:30am to make sure Amy’s glucose levels were good and stable. One exam morning I was woken by a CGM alarm and this is what I saw:
Amy woken up hypo before an exam in 2017

Roll forward to today, no alarms, no early wake up, life as ‘normal’ as it could be, and I woke up to see this:
Amy wakes bang on target
Amy’s current glucose target range is set as 5.3-5.5mmol. She’s woken bang on target, without alarms, wihout any checking or intervention by people, *just* FIFTY-EIGHT TBRs from AndroidAPS in the last 12 hours.

I almost need say nothing more at all, that picture conveys so much but it doesn’t tell you the full picture.

More than waking up on target

So looping makes sure she wakes up on target for each exam day but it’s so much more than that.

Amy has set her sights on studying medicine at university and becoming a Doctor, and whilst for this year no-one has offered her even an interview* she still needs to gain A or A* grades in her A Levels of Chemistry, Biology and Psychology. To do this is hard, damn hard and she’s been studying almost non-stop – hours every evening and most weekends – for two-years. For the last couple of months this has been ramped up and she barely has any free time.

Two years ago revision was just as full-on but it was broken up with hypos and hypers and occasionally a brain-fog which stopped revision in its tracks. Roll on to now, looping is keeping her levels as in-range as possible, and maximising the time allowed for decent revision which is absorbed.

Could it be any better?

Well, yes, it could.
Amy’s AndroidAPS DIY looping software runs on her phone, phones aren’t allowed in exam halls, so she cannot loop whilst doing the exams, some of which last many hours. She does of course start each exam perfectly in range (food consumption timing dependent of course).
This wouldn’t be any different if she used Loop as iPhones are required or OpenAPS where the software runs on a small computer, which also (probably) wouldn’t be allowed in the exam hall. If her looping software was on her pump then she would be able to loop all the way through the exams, so the Medtronic 670G would be a better option for exams.**

UPDATE:So after writing the paragraph above this morning quite a few people said that their child had been given ‘reasonable adjustments’ to loop for exams, it got me thinking but I was sure we’d asked and was told ‘no’. I was wrong. Amy went hypo in today’s exam and due to other issues her exam invigilator called me, so I took the opportunity to ask her about Amy looping if her phone was given to the invigilator within a clear case. The exam invigilator said that would be fine and spoke about there being lots of talk around subjects like this in the various online groups for exam invigilators. It turns out we’d never asked properly but from here on in Amy will be able to loop during her remaining A level exams. Lesson learned.

*which is a shame for a A grade student, top third clinical aptitude test score in the UK, national conference speaking, bags of life experience, diabetes/tech knowledge
** okay, Medtronic, I’ll give you that one, but just for exams only right.

“Alexa, ask T1Resources, what is….”

During the Christmas break whilst configuring my new Amazon Echo to use the already existing Nightscout Alexa integration, my Developer’s mind was curious how these Alexa ‘skills’ were created. I’d need an idea though, but what? What could I do? All the skills existed. Ok, let’s forget this idea.

Hours later I was putting some coding changes into the Diabetes/Tech Dictionary of terms on T1Resources.UK.

I realised THIS would be my Alexa project. It would be great if someone could say ‘Alexa, ask T1Resources, what is Looping’, or WeAreNotWaiting, or AMA, or ISF etc..

And now they can.

You can start off saying ‘Alexa, ask T1Resources, what is…’.
You can say ‘Alexa, ask T1Resources, tell me a random word’.
Or even perhaps – just for fun – ‘Alexa, ask T1Resources, when will I be cured’.
Ask about any of the acronyms found used with the DIY looping systems, like ‘AMA’, ‘flash’, ‘putty’ or ‘SMB’.
Ask about standard diabetes terms like ‘ISF’, ‘CR’, or ‘bolus’.
Have some fun asking what is ‘rage bolus’, ‘unicorn’, ‘dana’, ‘chapstick’ or ‘leaky reps’.

You can ask what Nightscout is, or #WeAreNotWaiting or Looping, as I am here:

Adding the T1Resources Skill to your Echo

t1resources alexa>Within you Amazon Alexa phone app:
– click the menu bars in the top left
– choose Skill & Games
– click the search icon
– enter T1Resources
– click T1Resources to view the skill info
– enable the skil
– you’re ready to try this on you Amazon Echo, or with your phone app.

T1Resources.UK’s Dictionary of Diabetes/Tech Terms

Back in October whilst standing in front of 200 health care professionals at the Royal College of Physicians in Edinburgh, a not-so-immaculately timed* scheduled tweet announced my latest project as I presented about it to the audience*

t1resources dictionary announcement
*I was ahead in my presentation by two minutes. Damn!

Earlier in 2018 Dr Anna Dover tweeted about trying to find out what all the terms used by the WeAreNotWaiting community meant. It seemed like a good project and surely it would only take a day or two, right? Nothing ever goes quite as planned and knowing that I wanted to announce it as my presentation I hurriedly started writing it a couple of weeks before.

It turns out writing the web site for the dictionary was no problem at all, but getting all the definitions live was; I thought there would only be 50 or so and now in January we stand at over 270. It became quite difficult to determine what was just tech words and what also might be helpful, so I started putting lots of stuff in. Plus I’ve added some terms just for fun.

Here’s a sample look at the dictionary, where I’ve done a search for OpenAPS, which is highlighted in green and has the all related terms underneath. On the left is the latest 5 terms added to the dictionary, plus a random term for you to learn about.
t1resources dictionary

You can find the dictionary under , Start Here, Diabetes & Tech Dictionary, or just go via its quick link http://bit.ly/t1rdictionary.

If there are any terms not listed click the ‘Want us to add a new definition?’ link and say what you would like to find out about.
If there are any definitions wrong click the icon to the right of each explanation and let me know what to change.

A note about Open Source: I’d initially imagined this would be an open source project but with a lack of understanding about getting started with Open Source development with my personal development environment I just coded it up, in private. One day when I have a bit of time I’ll change that, but in the meantime if you want to get access to the data please contact me.

Thanks for Paul Niven and Dr Anna Dover for the help and inspiration with this project.

Fun with Alexa/Nightscout/AndroidAPS – plus VERY important questions

After buying my eldest daughter an Amazon Echo for Christmas we decided to get one for the kitchen, then I remembered that it was possible to integrate Nightscout into it.

Within 30 minutes of starting from scratch I had it all set up, it was good, it worked well. Being a programmer though meant I couldn’t stop there so I delved into the unknown world of Echo development and added a couple of questions, just for fun, for Amy (video: 20 seconds in). After showing some of my Diabetes Dad friends I added a third question (video: 40 seconds in) which is an in-joke between us all.

The Nightscout and GCSE Game Plan

It’s 5am and I’m awake now for the day after being woken up by my Pebble smartwatch alerting me to Amy being hypo.

Game Plan

I’m not too bothered about the early start though as my alarm’s due to go off in a few minutes time as part of Amy’s GCSE Nightscout Game Plan, which aims to make sure Amy is perfectly in-range before she starts school on every day she has an exam.
Having in-range glucose levels means a couple of things for Amy: no extra stress on top of exam worries; being able to properly focus; more chance of her getting the results she wants.
So the Game Plan has been interupted by being a woken by a hypo alarm but it doesn’t matter as the key thing is that Amy will be in-range by the time she goes to school.

A break from Nightscout and CGM

I’ve been quite open about our recent lack of use of Nightscout, which feels strange given that I’m still presenting Nightscout to health care professionals. It’s always been about Amy’s decision to not want to wear any extra devices on her body (as well as her pump cannula). Amy made the choice to wear CGM and use Nightscout again because she knew it could help her through exam period.

Surely, a game plan is over the top?

Well, is it?
Amy is very close to being an A grade student and that’s something she wants, Jane and I have never put any pressure on her.
She has dreams of attending medical school and to be in the best place for that she needs three A-grade A levels, and to be in the best place for getting those she needs/wants A-grade GCSEs.
We’ve hardly seen her since January as each day after school she goes up to her room to chill out a little before picking up the revision books or doing practice exams.She’s done this virtually every day this year, plus weekends too, again it’s all her choice no matter how much we’ve tried to encourage more chillout time.
All this work could be undone by not being able to think properly during an exam.
Surely it would be silly not to use tools available to make sure Amy achieves her goal?

Still learning

We knew yesterday that Amy’s overnight basal needed changing but decided against making any changes the night before an exam, we’ll do it tonight instead.
Which is all well and good except that now, on reflection, I can see that given her bedtime glucose level she was always going to go hypo early this morning. I feel a bit silly now but it just goes to show that even 6 years in we still make mistakes.
Just like the fact I put a 0% TBR on at 5am rather than wake her and feed her glucose, something I didn’t want to do just in case she stayed awake. I’m regretting that choice too.

Holding my nerve

The only question now is how long I hold my nerve, hoping the TBR works.
Good news though, it appears to be working.