Basingstoke Type 1 Diabetes Awareness Evening 11/03/16

The start of a whirlwind long weekend of diabetes events was an event organised by our clinic which jointly covers the Royal Hampshire County Hospital and Basingstoke Hospital, and their surrounding areas.

There was one last year and I found it really good, an opportunity to speak with our consultant outside of clinic walls, to mingle with other parents and grill the reps.

Truth be told I was rather nervous about attending this event.

The last time we saw the team was this fateful day back in January and my anger at the apparent complete disregard for our wishes almost saw us transfer elsewhere. So this would be the first time we met since that clinic. How would it go, would I lose it or could we still be ‘friends’?

I decided to put that last clinic down as a bad job, a mistake, a misunderstanding and walked into the room as if that clinic had never happened. And I’m so glad I did. Things appear to be back to normal although we’ll not know for sure until the next clinic.

These events are great for networking and we’d agreed to meet several people there; Steve and Becky; Matt, Sonal and their daughter who adores Amy. I bumped into Claire who runs the Basingstoke PWD group and I suddenly remembered I’m meant to be talking about Social Media and Nightscout there soon so I went over to discuss it. (*writes date in diary before he forgets*). Amy had made a little gift for Matt’s daughter who was thrilled.

The room filled with families and many of us left to listening to the Tech talk. Matt and I haad hoped to present Nightscout as part of this talk but its lack of clinical trials meant we were denied. Shame really as I think the parents needed to hear it, it would have been far more appropriate than talking about Smart Insulin etc.. But then again, there seemed to be so many families who nothing of this stuff. One person even asked if there was any truth that Reiki could help, something I consider as helpful to Type 1 as slapping, although hopefully less harmful.

Matt and I had joked that I’d ask a question after the session, that question being ‘Matt, what’s your daughter’s glucose level right now?’ and looking at his Pebble he’d reply ‘x.xx mmmol/l, how about Amy’s?’ at which point I’d look at my watch. We never did, I bottled it. It could have been funny though right?

The next session was about Transition and Amy and Jane sat in for that. I was gasping for a drink so headed out only to bump into fellow DiabetesDad and cyclist Gavin. Gavin asked if I could chat with him about Nightscout for 640g and I creased up as Matt (the 640g Nightscout solution provider) was a metre away. “Matt, meet Gavin” I mentally said Sorry to Sonal for given her husband even more support to do, although I’m pretty sure Gavin will figure it all out.

I never ventured back into the Transition talk and it’s probabably a good thing as Jane told me that apparently at the first transition clinic they see the kid first and then the parents and child together afterwards. So why on earth did they not do that with us? I just may have exploded if I’d been in there.

I had a chat to Emma, our pump rep, quizzing her on the rumours of Animas’s next pump name, release date and features. She’s good though and gave nothing away, thinking obviously that no-one in the community knows about the 2017 release date of the pump which like Medtronic’s 670g will feature a hypo and hyper minimiser. I already knew that this new pump will use Dexcom G5 as its base, we’d prefer G4 of course with its 4x longer lasting transmitter, but G5 will be awesome in this pump.

It had been a great night, lots of interactivity, lots of chats, lots of meetups and more importantly I’d not glared at the team.

Presenting Nightscout at CWD FFL 2015 – the videos

This article contains the three presentation videos recorded at Children with Diabetes Friends for Life 2015 at Windsor on November 1st 2015. They are available on the Nightscout UK YouTube channel individually, or as a playlist.

Introduction

Here’s an uplifting video previewing the Nightscout conferences taking part in the Fall Autumn of 2015.

(Watch on YouTube)

Part One

A moving introduction to Nightscout from Wes and then the ‘What Nightscout Means To Me’ presentations from Kate and Jesus.

(Watch on YouTube)

Part Two

Myself, Tim and Stuart give ‘What Nightscout Means To Me’ presentations. Kate introduces Nightscout web pages, apps and CarePortal, Stuart introduces the advanced options, I introduce the reporting options, then take the mick out of Wes’s Apple Watch a little before reminding everyone that Nightscout is DIY, no-one will do it for you.

(Watch on YouTube)

Presenting Nightscout to Families at CWD FFL UK 2015

Nighscout FFL, Kev, what nightscout means

Building a team for Old Blighty

Back in September Wes from the USA based Nightscout Foundation gave me the honour (yep Wes, there’s a ‘u’ in honour 🙂 ) of asking me to join a faculty team they were having at the Children With Diabetes Friends For Life UK conference which took place last weekend. Wes was gathering a team of Nightscout and xDrip users together with the aim of showing families what Nightscout does for us.

Nightscout UK team
Left to right: Stuart, Jesus, Wes, Kate, Kev, Tim

And so the team was formed with me, Wes, along with Stuart and Kate whose kids have Type1, and Tim and Jesus who both have Type 1 themselves. Jesus is somewhat of a God (bet that joke hasn’t been said before eh Jesus?) in the community and flew over from Spain for the weekend.

Then Wes dropped the bombshell, he wanted us to present Nightscout, not just give 1-1 advice and info at a stand. Present! What? Me? “Erm, okay” I said very tentatively. Being on holiday for the Saturday I could sadly only attend the Sunday but the planets aligned as that was the day the presentations were (“Oh great!”).

Panicking about presentation slides

At 5am the alarm sounded.
I present often at work and am somewhat reknowned for having whizzy slides full of colour, animation and more importantly eye-distracting graphics which take the focus off of me, but I had a problem as I would have no time to prepare anything as I was on holiday. So at 5am on the Sunday I woke in panic and managed to cobble stuff together and from there on in I felt relaxed, I had a plan, I had slides, I was ready.

A team as one

Nightscout team, anonymousNone of us had met before but after arriving at Windsor and meeting everyone I felt like this was a team which had been together many times, we were so relaxed together, sharing jokes, poking fun, and just understanding everything each other was talking about.
Our first task was to decide who was doing which bits and I found myself volunteering for a lot more than I thought I would. Perhaps I wasn’t so nervous after all.
Wes posted a photo: we were no longer anonymous.

Morning presentation – What Nightscout means to us

The morning session wasn’t advertised in the programme, just on flyers at our stand so we had less than 20 people there, but that was great for my first foray into public speaking. I’ve always felt that if anything I say or write opens the eyes of just one family then I’ve done my job because I know that family will open the eyes of another.
Due to enthusiastically overrunning our slide timing the session really turned into a What Nightscout Means To Us presentation.

Nightscout, Wes opening speechWes opened the presentation with a heartfelt introduction to Nightscout and what it mean for him, it was very moving, speaking about how his son’s T1 diagnosis at 12 months affected the family.
Kate spoke about how Nightscout “makes the diference” and spoke of how the “glanceability” of her glucose readings on a watch reflects what her driving instructor told her “nothing should ever come as a surprise in your rear view mirror”, she’s aware of what’s happening before it escalates into a difficult to deal with hypo or hyper.
Jesus’s story to me is amazing. He’s a parent but he is the T1 and he developed software for himself to monitor glucose readings. One day he heard John Costik’s Nightscout story and within an hour sent him an email to let him know that Jesus could get readings from Medtronic Veo CGM and could amend it to work with Nightscout. I can’t begin to tell you how moved I was by Jesus’s story of selflessness.
Tim’s story was another good one, speaking how great the community is and how Nightscout has pushed the boundaries and helped Dexcom release Share ahead of its original plan. Having Type 1 for 32 years he had a Dexcom receiver but built an xDrip and is pleased to realise the much better calculation engine than that available in UK Dexcom products, with the added bonus of extended life sensors. (USA has the ‘505’ software and Share but this has not been released in the UK.)
Stuart spoke about how Nightscout lets him know “at a glance whether to react or relax”, which along with Kate’s “glanceability” sum up Nightscout very well for me. With his daughter being 13 she is starting to manage her own diabetes and diabetes allows Stuart and his wife to pull away more and only intervene when required, meaning his daughter finds it less intrusive.

My presentation: BG’s are not as important as Snapchat or 5 Seconds of Summer

Nighscout FFL, Kev talking about watchesWhen my turn to speak arose I felt calm, I just wanted to get my story out there, I was somewhat surprised I wasn’t a bag of nerves.
I spoke about how to a teenager almost nothing was more than important the weekend lie-ins and that Nightscout means I’m not worried about whether she’s too low or too high when her bedroom door is closed till noon.
“BG’s are not as important as Snapchat and 5 Seconds of Summer” was my next line. Amy wants to be a teenager and do teenagery stuff like listening to her music and chatting online with friends, probably about the music they’re listening too…and boys…and boys who are in bands…like 5SOS. I mentioned that whilst cooking I can glance at my watch and decide whether I need to intrude on Amy to ask for an early BG check so we can pre-bolus, or adjust to get her at the lower end of her range before eating. Like Stuart’s daughter this is less intrusive for Amy than before Nightscout.
I explained how I use Nightscout to “nudge” Amy. With my range set from 3.5-14mmol and Amy’s set from 4-9mmol (her choice) I know that she would have had an alarm if over 9 but if she reaches 13 for example it’s probably because she’s not noticed an alarm, so I give her a gentle nudge to do a check or make an adjustment.
My key message though was how Amy’s HbA1c’s had changed through her time with Type 1:
hba1c history

Nightscout and how it works

Nighscout FFL, Kev, nightscout reportingKate went into the basics of Nightscout, the website, the browsers and phones and what appears on the screens and gave an overview of CarePortal. CarePortal is where kids and school carers/nurses can enter information about carbs, insulin and many other things into Nightscout which can then immediately be seen by the parent/carer, which in turn means that worries about Hypers may be negated if the parent can see insulin has been given, meaning in turn no panicky phone calls to school.
Stuart expanded on this talking about the ‘pills’ which appear on the screen and show you values such as Insulin On Board, Carbs On Board, and the Bolus Wizard Preview, which based on settings you’ve entered gives you an idea what sort of action might be required to get the child back in range. Stuart stressed that this is only for an idea of what to do and shouldn’t be used without deciding on whether that action is appropriate or not.
Nighscout FFL, Kev talking about watchesI presented about the reports Nightscout gives, comparing them favourably to Diasend which I rarely use now. One report gives you an estimation of A1c and ours said 6.8% prior to the last clinic when Amy got her 6.7% result.
Just for fun us Pebble watch users decided to do a speed test with Wes and his Apple Watch, to see how quick we could all glance out our kids’ glucose level. It took Wes a fair bit or time.

Finally

Finally, it was lunch time, and as the engaged audience left the room I knew the team had done a good job and we eagerly awaited the afternoon session which would include presenting solutions and a workshop where we could solder some bits or help get people going with their Nightscout solutions.

Wire free charging for your xDrip

NOTE: xDrip used to be called DexDrip so you might find some references to the old name in this article.

 

Qi

I’m slightly jealous at the moment…

Andrew Abramowicz wanted to take his xDrip to the next level, so he made another one with inductive charging using the Qi wireless receiver module from Adafruit. He increased his battery size to 2000mAh which is roughly the same size as the charging module, which is a little on the delicate side.

Watch this video of how to connect the module up:

PLEASE READ THIS ADVISORY
a) Never make a medical decision based on a reading from any CGM device, whether certified (eg Dexcom) or not (eg xDrip). Always perform a fingerstick blood glucose check first.
b) xDrip is a DIY product, decide for yourself if you wish to use it. Build it, test it, test it again and use (if you want to) in conjunction with a certified receiver.
c) The fact that it is working for us does not mean it’s right for you.
d) Never build a xDrip for anyone else and never sell one.
e) The blogs are provided for information only. We are not endorsing it for use by others, nor promoting it, just merely publishing our information as well as answering questions from previous blog articles.

xDrip Test Results (vs Dexcom’s 505 algorithm)

NOTE: xDrip used to be called DexDrip so you might find some references to the old name in this article.

 

xDrip comparison - overviewA graph from a Nightscout website showing
results from Dexcom and xDrip data

Many people have asked questions about the accuracy of xDrip’s algorithm in comparison to the latest Dexcom G4 algorithm, codenamed 505.
To answer this question for himself Andrew Abramowicz decided to get xDrip and an original Nightscout rig to upload data to the same database at the same time, with both sets of data coming from the same Dexcom G4 sensor/transmitter. This then is a true test of how things worked for Andrew and his family. Thanks Andrew for allowing me to use this these images on this page.

PLEASE READ THIS FIRST
a) before using xDrip for prime time use, run these tests for yourself.
b) if you don’t calibrate properly your results may vary, correct calibration is the key.
c) while these results mimic that of the 505, it is still an “experimental algorithm” and should be used with great caution.
d) as (c)…but to add…’especially in children’.
e) before using xDrip decide for yourself if it is good enough for you based on your own tests
f) we are not “endorsing” it for use by others, just publishing our findings.

NOTE:You can click on most of the images to view the full image in your browser.

A little background bit on the data, which you can probably skip
Andrew’s son wears a Dexcom G4 CGM sensor and transmitter and for a while has used a Nightscout uploader rig to send CGM data to the cloud to be viewed on a Nightscout web site.
Andrew recently built a xDrip device, which can also upload its data to the cloud to be viewed on a Nightscout web site.
The Dexcom G4 receiver (which is part of the uploader rig) and the xDrip both read the same data from the same Dexcom transmitter and sensor.
Both are loading their data up to the same cloud database which is then linked to the same Nightscout web site.
Data from both is overlayed together, allowing for an easy visual comparison and ultimately to see any discrepancies.
What’s all those strange low numbers?
If you’re used to seeing much higher numbers – perhaps you live in the USA? – then don’t panic, the glucose values show are in mmol/l because Andrew is in Canada. To work out a mg/dl value from a mmol/l value just (!) multiply any numbers by 18, so 5mmol/l is 90mg/dl, 10 = 180 etc.
An explanation of a Nightscout website graph
The image below is of Andrew’s Nightscout website. For those who have never seen one before here’s an explanation of what is shown.
Top left is the time ’10:50′ and showings that the last CGM data received happened 1 minute ago.
Top right is the last CGM reading of 7.2mmol/l (129.6mg/dl) and this has stayed the same from the previous reading.
On the right is the range axis, showing 22mmol/l at the top and 2 at the bottom.
The dots show show the glucose readings, with green dots being actual readings and blue dots being projected readings.
The rightmost green dot is the last reading of 7.2mmol/l from one minute ago.
The rightmost green dot is actually two dots, one for Dexcom, one for xDrip but they are both the same value.
The first reading shown on the left shows that there was a difference between Dexcom and xDrip of approximately 0.4mmol/l (7mg/dl).
The two red dots on the left are where a calibration has taken place, one for Dexcom, one for xDrip.
xDrip comparison - spot on
More explanations
Here’s a visual explanation

xDrip comparison - chart 1
Comparison overview
Here’s an image showing how close xDrip and Dexcom are for the majority of the time.
xDrip comparison - overview
An overnight test
The next image is of an overnight test showing a hypo in the middle. During the hypo the variance was the largest Andrew has ever seen, before the correction with glucose it looks to me to be about 0.4 mmol/l out, straight after the correction either Dexcom or xDrip appears to have gone wildly out for one reading.
However, no-one I know would rely on CGM data anytime near a hypo situation and never should any treatment been done with first taking a finger prick blood glucose test.

xDrip comparison - hypo - big difference (0.5 mmol!)
At the end of an overnight test
Although there hasn’t been a calibration for 10 hours values are almost exactly the same, maximum out is 0.4mmol/l (7 mg/dl).

xDrip comparison - overnight without calibration
A 48 hour trace
The CGM trace below shows a trace over 48 hours – you can scroll left/right.
At times you can see there’s a difference, potentially 1 mmol/l out at maximum point.
Upper line is at 8mmol/l (144mg/dl), lower line is at 4mmol/l (72mg/dl). Red dot indicates a calibration.
Click here if you want to view the full image

xDrip comparison - 48 hours
Distance test
Here’s a test placing the xDrip at different distances away from the transmitter, showing that at 25 feet it ability to receive data is impaired, yet at 10 feet it is perfect.

xDrip comparison - distance
Interested in further posts about this subject? Why not like this blog’s Facebook page and get notified of updates, or click ‘Follow’ using the button at the bottom-right of this page.

PLEASE READ THIS ADVISORY
a) Never make a medical decision based on a reading from any CGM device, whether certified (eg Dexcom) or not (eg xDrip). Always perform a fingerstick blood glucose check first.
b) xDrip is a DIY product, decide for yourself if you wish to use it. Build it, test it, test it again and use (if you want to) in conjunction with a certified receiver.
c) The fact that it is working for us does not mean it’s right for you.
d) Never build a xDrip for anyone else and never sell one.
e) The blogs are provided for information only. We are not endorsing it for use by others, nor promoting it, just merely publishing our information as well as answering questions from previous blog articles.

xDrip Software Installation Video – Android App, by Dietrich Lehr

NOTE: xDrip used to be called DexDrip so you might find some references to the old name in this article.

 

xDrip logoOnce the software has been loaded on the Wixel (see video on previous post) you will need to install the software on your Android phone/tablet which will read the data from the xDrip device.

UPDATE:
Since writing this page everything has been simplified and you no longer have to follow the steps in the video. Now you can just download the application here.

In this excellent video Dietrich Lehr takes us through each part of the installation, from the downloading of software, the installation of software, the creation of keys and finally loading that software onto your phone. Below the video are the links used in the video as well as the link to Android Studio’s download page as you will also need that app.

Links
Android Studio download home page (Android Studio installation video)
GitHub repository for xdrip Android app
xDrip Android app ZIP file

Thanks to Dieter Lehr for making and sharing this video.

xDrip Software Installation Video – Wixel, by Andrew Abramowicz

NOTE: xDrip used to be called DexDrip so you might find some references to the old name in this article.

 

xDrip logoOne of the key components of the xDrip device is the Wixel chip by Polollu, it’s the part which reads the data from the Dexcom transmitter. To get it up and running you need to load Stephen Black’s free software on it, a process which can seem daunting at first but really is simple.

In this excellent video Andrew Abramowicz takes us through each part of the installation, from the downloading of software, the installation of software, the configuration for your Dexcom transmitter and finally loading that software onto your Wixel. Below the video are the links used in the video.

Links
GitHub repository for wixel-xdrip
wixel-xDrip ZIP file
Wixel drivers and software from Pollolu
Wixel Development Bundle

Thanks to Andew Abramowicz for letting me put this video up on my blog.

Interested in further posts about this subject? Why not like this blog’s Facebook page and get notified of updates, or click ‘Follow’ using the button at the bottom-right of this page.

PLEASE READ THIS ADVISORY
a) Never make a medical decision based on a reading from any CGM device, whether certified (eg Dexcom) or not (eg xDrip). Always perform a fingerstick blood glucose check first.
b) xDrip is a DIY product, decide for yourself if you wish to use it. Build it, test it, test it again and use (if you want to) in conjunction with a certified receiver.
c) The fact that it is working for us does not mean it’s right for you.
d) Never build a xDrip for anyone else and never sell one.
e) The blogs are provided for information only. We are not endorsing it for use by others, nor promoting it, just merely publishing our information as well as answering questions from previous blog articles.

A great start to using CGM to get the bigger picture

wpid-20140619_173616.jpgA few weeks ago on the 18th June Amy inserted her first CGM sensor. On the 12th July she took it off.
It lasted 25 days.

Initially it was very exciting seeing how accurate Dexcom was in comparison to Amy’s normal finger-stick checks, seeing those graphs, flipping between 1 hour graphs, 3 hours, 6, 12, 24.
Then it felt scary: how high she had gone after a meal, how high during the night, the fast dropping blood glucose levels, the lows after school.
Then it felt like we could put this information to use and start to alter Amy’s basal/background insulin levels. That is after all one of the key reasons we got it.

A screen full of information

flatline-day

The screen shows a lot of information:
The red line is the level where Amy will get alerted that she’s ‘high’, we’ve set it at 13.3mmol/L.
The blue line is the level where Amy will get alerts that she’s ‘low’, we’ve set it at 4.4mmol/L.
The dotted green line is her CGM trace which believe me doesn’t often look that flat, it’s more like a section of the alps or England’s rolling hills.
So in the blink of an eye you can see it’s 13:56 and Amy is currently 6.7mmol/L and rising, steadily, because at 1pm (one yellow mark from the right) having slept in really (really) late she woke up and had lunch 30 minutes later.

An opportunity for experimenting and learning

Combo bolus (60/40/2.5hrs) for Rice/CurryCombo bolus (60/40/2.5hrs) for Rice/Curry

Some graphs don’t initially look very good at all, but they are as they’re always opportunities for learning. Take the one on the right, it’s a graph of us experimenting with eating a Chicken Xacuti curry and rice and giving a combo-bolus on the pump of 60% of the insulin immediately and the remaining 40% over 2.5 hours. It tells us a lot…don’t eat rice (joke).
From the graph we can tell that need to give less insulin up front so we’ll probably try a 40%/60% next time. We know this because she started at 6.5mmol/L and dropped to 3mmol/L(ish) within the first 90 minutes.

Analysing the averages

Unfortunately the previous graph isn’t too much use because at that time Amy’s basal/background insulin was wrong and her levels were high from 10pm until about 4am.
How do we know? We uploaded the CGM data to Diasend and analysed it, although at first it didn’t make us feel very good to see what was really going on:

diasend

That looks all very confusing but the two key things look at are the green bar (which is the magic zone of between 4mmol/L and 8mmol/L) and the red line which shows the average blood glucose levels for each particular time of the day.
It tell us we have a problem: she’s rarely in that magic range, her average is too high, she needs more basal/background insulin.

The foundations need some work

Deciding to focus on the night time of 10pm to 8am we didn’t do any changes to her basal profile for two weeks as we wanted to discuss the CGM results with the nurse at clinic. We all agreed on the changes required and then watched the next few nights’ graphs, making some tweaks here and there, before finally getting the graph below, although we’ll make sure she’s a little higher when she goes to bed from now on.
flatline