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The road to Amy’s DIY closed loop artificial pancreas #OpenAPS

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Day 6, nicely in target

TL;DR
I built Amy a closed loop artificial pancreas
She’s been using it for one week so far
It’s great

 
After getting into the world of #WeAreNotWaiting and Nightscout, I followed with great interest the progression of OpenAPS, a do-it-yourself closed loop artificial pancreas. I read the posts by Dana Lewis and Scott Leibrand with awe, wondering whether closed-looping would ever be something Amy might want.

If you’ve not heard about OpenAPS you might want to do a little reading first. In essence a matchbox-sized computer reads CGM data, figures out what temproary basal rate (TBR) could be used to help get levels on target and tells the pump to do the relevant TBR. If you’re worried it’s not safe, think again after reading this.

Back in October 2016 I decided I should gather the necessary kit together and should Amy ever want to close loop I’d be in a position to help. I’d need an old Medtronic pump, an Intel Edison chip and an ‘Explorer’ board. I sourced my first pump from eBay, it was no good, it was dead. The second was better and usable but I sourced a better third one, a 715, which I got from the Netherlands after asking all the right questions and requesting videos of it working.

I let Amy know that I had the kit should she ever be interested; she wasn’t. All the kit sat in a draw patiently waiting in a box adorned with a #WeAreNotWaiting sticker. Oh, the irony.

Last November I went along to a DIY closed-loop artificial pancreas build event hosted by the UK looping commmunity’s Tim Street, a tremendous driving force behind helping others to close the loop themselves, or understand and learn about it, or understand many different things about diabetes, plus he’s written a great guide to closed looping.

I had no intention of building anything but I went for the chat and to see what was happening, but I took my kit pieces with me. I came home with an almost working closed-loop artificial pancreas!

Amy seemed more interested now she could see something working.

Amy wasn’t using CGM at the time but my friend Alasdair let us use his CGM data from his Dexcom account to help me test, test and test the rig I’d built. It was working tremendously well, I watched in awe is it made the temporary basal rate changes which were sent to the pump – containing water and not attached to anyone.

A couple of weeks later my friend Craig gave us a G5 transmitter to help continue testing which I wore, along with the 715 pump pumping water for a few weeks. Thankfully my phone using xDrip+ worked well to collect the Dexcom G5 readings and my CGM trace was illuminating, a ‘normal’ person’s glucose line certainly isn’t flat, especially after eating my nemesis which is clearly bread.

OpenAPS rig Dean and pumpIt still wasn’t the right time for Amy, so I waited, applied no pressure and just hoped one day she’d ask to use it.

That day happened the morning after the Rise of the Machines event when Amy watched the presentation videos of me and then OpenAPS’s founder Dana Lewis, whom I had the great pleasure of introducing to Amy only a couple of days earlier.

Roll on a week and Amy went live on her rig ‘Dean’ (Supernatural reference) which tells ‘Castiel’ (the 715 pump) what to do. It’s been a full-on learning week, with tweaks here and tweaks there.

We started cautiously, setting the target range to 7.0-7.5 mmol, something we’ll drop later when Amy’s feeling more confident. It’s doing very well and every morning is like this:
Day 6, nicely in target

It’s already offering an improvement to less time spent hypo, or rapidly changing BGs, or standard deviation. More importantly Amy is having to make less decisions, or reactive actions. It’s important to remember this is the end of week one with a target set to 7.0-7.5, so it’s easy to see how A1C – if that’s what you’re worried about – can be lowered by dropping the target range.
Distribution, day 8 for 36hrs

The Nightscout and GCSE Game Plan

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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.
Capture

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.

From Night-crawler to Nightscouter, a Diabetes Mum’s story, by Lucy Veal-Johnson – Part 2

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I met Lucy and her family about a year ago, at an event organised by the local (South Hampshire area) families support group, Seahawks. We’ve spoken quite a bit, through highs, through lows and one day I offered her the chance to tell her story.
Have you already read part 1, Night-crawler to Day-walker?
Here’s part two of a three part story.

A quick introduction to technology

Sienna wears first g4Sienna wearing her first Dexcom G4 sensor

We were quickly introduced to Nightscout early after diagnosis as my best friend had a childhood friend in France and her little one had T1 (small world). We got talking on Facebook first and she told me of how they use this home-made computer like box and link it with a CGM (Continuous Glucose Monitor) so that they could see her levels on her phone or smartwatch anywhere. She could be at school and you could be doing the weekly shop and see her levels at any given time.
Later on this was to become the beginning of an end for my immense Night-crawling,

A hard smack in the face

sienna1Sienna has an awful hypo
One reason why CGM is so useful

Having talked to the Psychologist and Diabetes team about how scared I was of losing Sienna in the night I asked about CGMs (Continuous Glucose Monitors) to be told that we were doing a fab job and didn’t need one.
As encouraging as that was it didn’t help much.
I took it as a hard smack in the face because I felt my fears and the tiredness were all getting too much for me to cope with. I started looking into funding our own Dexcom CGM as a way of seeing her sugars without having to prick her fingers, without disturbing her, without me or us getting out of bed to test her. To give us both that much needed rest.
The CGM would allow a sensor to sit underneath the skin and tests the fluid, which in turn would send her sugar levels to a transmitter, in turn sending it to a handset/receiver.
Nightscout was mentioned to us right from the start of her dx (diagnosis). I had a friend overseas to talk to about how she found it with their little one. She could see her little ones sugars on her smartwatch.

I am not going to wait

xdrip
Sienna’s xDrip which I built myself

This new found technology was my way forward, I wasn’t waiting, I wanted to feel more settled and to fully be at ease in caring for Sienna but it all seemed a million miles away.
Nightscout was on the cards like a new goal I had to achieve and has now become a big part in how we care for Sienna.
I asked the team again about funding for Sienna and we were told this time that she would be funded by the NHS and that it wouldn’t cost us a penny. (How thankful are we to have an NHS system like this, but also a shame as really it does help more than they think).
But I would feel half lost if we didn’t have Nightscout.
Knowing that she would be funded we set about ordering some parts to build our own xDrip, this was the bridge between Sienna going anywhere without me and me wondering whether she was alright, say at preschool or going to see grandma, nanny and grandad, or friends and not worrying about the what if’s as I can see the what now’s.

Remotely caring for Sienna, together

xdrip3
xDrip fits nicely in a TicTac box
xdrip4

We can all be proactive in caring for Sienna as a family.
Sienna going off to preschool was a big issue for me as I felt that I would be out of control of everything. I felt that if I get it wrong I have only myself to blame, if someone else gets it wrong that would mean so much more. A mother will protect her young!! (but they are all trained in Type 1 and have a care plan).
With Nightscout I can now be sat at home knowing her sugars are fine as I can physically see them on my phone, just as good as the Dexcom, I can now leave her at total ease.
I cannot understand why the Nightscout has not been snapped up on the NHS? It should be. It gives parents that full peace of mind, it gives more than Dexcom can alone.
We waited too long to get funding to make this happen.
Parents, family, friends don’t want to wait, they have as much love for our little one as we do. It has been a massive positive for everyone and they feel more in control it’s the missing link. My advice is look into it, get it sorted, sort the levels and sort the stress that T1 as a whole brings.

Brighter days

Sienna is so brave as all our T1’s are, she makes my world a brighter place to be when I’m in her company and if she can be strong and not let it bother her then so can I. She is going to school in September and I can’t wait to watch her transition into year R and start her school Journey.
Together we will fight the T1 battle everyday but it does get easier and you start seeing the brighter side of things. Situations like how many different or unusual places have you found a used blood strip, how many times have you tried testing the wrong kid or how many times have you disposed of the food wrapper only to delve back into the bin minutes later because you haven’t checked the carbs on the back first.
But if all else fails know that you’re not alone, you really have thousands of friends all going through the exact same thing.
Thanks to all those people that made Nightscout possible for us, you really are something and beyond.

Step-by-step Guide to Soldering an xDripKit

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solderxDripKitIf you’re interested in building an xDrip but are worried about soldering all the components and wires together properly then a simpler solution might be to buy an almost ready made xDripKit.

It’s simpler to make and get working quicker, but for me personally I’d go for making my own xDrip from components everytime, they’re not so hard to build and you can make them smaller, or a more suitable design.

Here’s a step-by-step video showing just how simple it is to get an xDripKit device working.

httpv://www.youtube.com/watch?v=9UH7W8oFZdM

DISCLOSURE
This video has been made without any knowledge or involvement from Steve, the seller of xDripKit. No money, kit or even chat has been exchanged between us.

The 2nd #GBDOC Conference (#PWDC16)

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pwdc16Last year’s first ever #GBDOC conference for people with diabetes turned out to be very successful, very popular and very enjoyable, so I was glad to hear Team Blood Glucose were going to run a second one. This year’s conference was set up to be a two-day affair at the more upmarket Colwick Wall in Nottingham.

Going, not going, going

As much as I’d enjoyed 2015’s conference I couldn’t really attend this year’s as I had commitments on the Saturday and couldn’t justify the £150 expense (tickets, hotel, travel) and I was sad to disappoint the several friends who’d hoped I’d go. Then Abbott stepped in to support the event financially making it free to attend and more importantly meaning I could attend for just one day, on the Sunday.
As it turns out my Saturday event was cancelled so I could have blooming gone for both days.

The excitement rises

As with last year’s conference my Twitter feed started buzzing several days before the event, everyone excited to finally meet or meet again people they’d spoken to daily for numerous years. If truth be told the conference itself wasn’t the draw for me at all, it was the people.

Trying to avoid Saturday’s excitement

treeAfter finding my Saturday event cancelled and disappointed that I could have attended the conference’s first day I couldn’t face the excitement on Twitter and decided to I needed to distance myself. So I positioned myself up one of my apple trees to give it a little prune, I think I may have overdone it as it took all day.

Stupid o’clock on a Sunday

A 6am start on a Sunday is unheard of but was a necessary evil to be able to arrive at Colwick Hall for the 10am start after a 3 hour, 175 mile drive.
It felt ironic that with so far to travel I was actually the first to arrive, closely followed by my good friend Nick and we went in to be welcomed by Rhodri, who helped organise this year’s event.
Nick, Rhodri, me, and no-one else.
pwdcarrival

A sea of friendly faces

People started arriving, Bob, Philippa, Sacha, Sarah, Steve, Paul, Jules&Lee, Lydia, Lis, Jo, Veeny and so many more. Chatter and laughs filled the room and it almost seemed a shame to break it when the conference started.

Open format conferences, the way forward

In open format conference style there was no agenda and it started with everyone deciding what they wanted to talk about and the topics were grouped together and sessions arranged.

Session One: MDI to Pump and Tech

A few people, Philippa mainly, had asked me to attend the conference just in case anyone wanted to ask me any tech questions regarding CGM, Nightscout or xDrip, so it made sense I’d join this session. I was pleased to hear that Tim Omer had done a great job on the Saturday with chats about xDrip, OpenAPS, HAPP and general artificial pancreas and CGM topics.
The session started off with a discussion about pumps, an intro on what they are, benefits of using one and about getting approval from clinic/CCG to get one. To be honest after 15 minutes I’d switched off a little – as it wasn’t so relevant to my situation – and happily chatted quietly with Steve whom I live a few miles away yet travelled 175 miles to chat to.
But I heard Lis say ‘Kev would you like to say something?’
‘Erm, no’ I panicked ‘I’ve not really been listening’.
The pump discussion had concluded and they wanted to hear about tech, from me, now; I really should have thought about this in advance.

CGM, xDrip, Pebbles, glanceability

Recently I’ve spoken to many about Nightscout, the ability to see your kid’s glucose values from afar, but Nightscout isn’t really suitable for an audience of adults, so I switched to talking about getting glucose values on a watch on your wrist.
Taking a step back I went through CGM and particularly how DexcomG4 broadcasts a signal out to anything which wants to listen.
Moving on to xDrip I explained the £40 DIY kit I’d built back in January 2015, which some had seen at last year’s conference when Amy demo’d it to a few.
I spoke about the glanceability benefits of having your glucose level on your watch gives and explained how it helped Amy through the day, especially being at school where use of phones is banned or frowned upon.
Nic and Alyssa asked some great questions about Dexcom and Medtronic CGM and I answered questions about extending the life of DexcomG4 sensors – obviously no-one does that right?! – and different positions they can be worn.
The time whizzed by and 20 minutes later and it was time for me to shut up.

The Afternoon Sessions

After a lovely lunch with great conversation with Philippa and a table of others it was time for the afternoon sessions although I’d decided session two would be reserved for a chat with Jules and Lee whom I was surprised to see, knowing that she was worn out by day 1.
For session three I joined in with the ‘Food’ topic, interested to hear other people’s opinions on food, different diets they used to manage their diabetes and its effects on glucose levels. After a great discussion led by Nick and with some great input from Vicky and Jo, before Paul arrived and Nick asked him to explain Low Carb High Fat and how it worked for him.
I found myself nodding with Paul’s chat so much my neck ached, he’s really got the knowledge of this completely sorted and it was a breath of fresh air to listening to someone helping others out with fact, not fiction nor flippant comment. Paul spoke in length about ketones, ketosis and diabetic ketoacidosis (DKA) and explained why people with diabetes can deal with ketones. He also answered many questions on how to get started in becoming ketogenic, truly great advice for those who were there and interested.

Post sessions chat

Yet again more time was devoted to chat with friends old and new and I enjoyed my chats with Bob and meeting Tim, Melissa and Matt for the first time, as well as chatting with numerous people who’s names I sadly haven’t remember.

It’s all over

And before we knew it the conference was all over and it was time for the long drive home. I’d had a great day, it seemed everyone had a great day/weekend.

Thanks

I’m not exactly sure of who did what but I’d just like to thank Paul, Alex, Rhodri and TeamBloodGlucose for all they did to organise and run the conference. It’s truly a great event I’d suggest everyone attends next year.
I’d also like to thank Abbott for the investment which meant that I could attend.

Diaversary #5

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wpid-img_20150515_145525703_hdr.jpg
Amy at the Lilly National Paediatric Team
Conference in May

Another year passes, another 122 insulin pump set changes, another 3500 blood glucose checks, another 2000 carbohydrate guesses and insulin doses and numerous daily Type 1 Diabetes management tasks.

I’m no longer feeling the ‘Meh‘ I felt this time last year but I’m glad I felt like that then as it’s spurred me on for this year.

Amy’s diabetes management has never looked so good. She has – and we have – put a lot of work into getting her levels within range, her glucose fluctuations smaller. As a result her HbA1c yearly average looks favourably against the new NICE target of 6.5%. It’s no small feat, it takes a lot of work and I hope it isn’t taking its toll on Amy’s soul. Some days it appears it’s done with ease, others it’s a struggle, some days fluctating levels seem minimal, but rarely.

Dexcom G4 CGM, Nightscout and xDrip have played a big part in this year’s reduced A1Cs. I built our first xDrip in early January and it’s been used on and off since then – we self fund so full time CGM use is out of the equation. It’s given us lots of data to enable us to pin-point insulin:carb ratios, insulin sensitivity factors and durations, all of which are necessary to help with the many insulin doses and corrections required. We’ve got better at altering her basal profile, a task we do together, and this too has made a difference. After a trial Amy requested her very own white pebble watch to view her glucose readings on, leading me into a world of smartwatch envy which I just couldn’t battle for long 🙂 My watch will easily – and silently – wake me if Amy’s glucose levels drifts into areas we’d rather it wasn’t, meaning I can get up and treat her levels before she drifts back off to sleep and wakes up within range in the morning. I believe this management is priceless in enabling Amy to progress into the top sets of most of her school classes.

With all this CGM data there is a price to pay in the name of there perhaps being too much data. You can be teased into a world of constant alterations, boluses and TBRs and often it’s a good idea to take a step back. It’s a very fine line which I’m not sure we’ve figured out properly yet. That’s a good thing about enforced CGM breaks, no alarms.

I’m so proud of Amy’s management of her Type 1, she doesn’t sing and dance about it, she doesn’t seek limelight nor sympathy, she just gets on with it no matter how much it may hurt her body or mind that day. We give her the encouragement – sometimes a lot – she needs but ultimately she calls the shots. As time moves on she will call more and more shots but for the time being this is a joint effort through and through.

2016 is possibly set to be a great advocacy year, particularly for Nightscout and I’m proud that Amy will be by my side for some of this.

Open Loops, Closed Loops and Tim Omer’s Hackabetes Artificial Pancreas Project (HAPP)

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happ
HAPP – from Tim’s blog
www.hypodiabetic.co.uk

It was a turn of good fortune that Tim Omer’s presentation to the London Type 1s group fell on the same day as the Medical Technology Awareness Week Reception at Parliament I attended. I was looking forward to this event, it didn’t disappoint.

But first: That annoying Guardian article

Having created our first xDrip in early January and using it effectively since then I was more than pleased to read that Stephen Black’s xDrip design was at the center of his system. I was intrigued, I needed to learn more and an article about Tim in the Guardian gave me that chance. Unfortunately although Tim’s article from the Guardian in late October gave a great overview of what he was trying to do the journalist neglected to print any of the information Tim gave them about who designed the different parts. I’ll be honest, this annoyed me, it’s lazy journalism and I’m suprised the author, Lord Darzi, who has a medical and scientific vocation, did not list the relevant sources.

A bloody nice bloke

I’d never met Tim before but what came across strongly was that he’s very knowledgeable about everything Type 1 tech, whether it be at Dexcom G4 or G5, artificial pancreases, insulins, many types of bolusing as well as the tech stuff, like Bluetooth, RF and NFC to name but a few. He’s also a very nice chap, more than happy to answer any question to help the person asking, really Paying It Forward to make others’ lives easier. As Paying It Forward is my current voie de vie it’s clear Tim and I would get on well. Then add a love a travel and all round geekiness and it gets even better.

A brief history of time…it’s only three years long

Tim spent quite a while going through the history which led to HAPP, from John Costik, Lane Desborough, Jason Adams, Ben West and all the other Nightscout founders and developers, then onto to talk about Dana and Scott Leibrand being the first to ‘close the loop’ – that’s where the pump is controlled based on inputs from CGM data. He spent a good bit of time crediting those forerunners in enabling him to get where he is now.

Let’s talk about Loops baby

Let’s stop for a moment to talk about about loops.
An ‘open loop’ design takes CGM data and suggests actions, the pump is never touched, or even connected to the system.
A ‘closed loop’ will actually control the pump.
A ‘closed loop’ system is therefore probably what people would see as an actual artificial pancreas, it controls the pump to reduce or increase the level of insulin given. One type of a ‘closed loop’ system is that run by Dana/Scott and follows the OpenAPS method where it constantly puts on TBRs (temporary basal rates) and will potentially stop all basal insulin delivery for a moment of time, or increase the amount of insulin for a moment of time. This use of TBRs is for me an important thing as it’s a safety mechanism, given that it is constantly monitoring, calculating and adjusting. Just imagine what would happen if the system gave a 2 unit ‘correction’ and BGs started coming down rapidly, it couldn’t backtrack. That’s not the case with TBRs, much safer indeed.
I’ve seen the results of Dana’s system, it’s very, very impressive.
And it’s not just Dana: there’s 16 people who are running a ‘closed loop’ OpenAPS system. Amazing eh?
Going back to ‘open loops’, it’s just what we do already right, using Smart Meters or our brains? At the moment us parents and T1s make decisions many times a day about what action to take to amend a glucose level that’s heading out of range. But the problem is that emotion is brought into the loop (sorry – dreadful pun) and we end up over-correcting too often. And we have to think to take a look at the BG or CGM trend and do something. An ‘open loop’ sorts some of that out by using notifications and suggestions and of course you don’t need to accept the suggestion.

HAPPy days

So where is Tim now with HAPP? It’s at the ‘open loop’ stage, where it runs nicely on his mobile phone and sends notifications to his watch which he can choose to act on or not. Although I noticed I’m not sure that everyone realised that Tim had set a couple of TBR adjustments during his demo. At the end of the demo he showed us the results with his own Nightscout page and everyone could see the 0% TBRs he’d put on, which on HAPP had suggested and Tim felt comfortable with.

A HAPPy future

Once Tim has honed his current ‘open loop’ system he will be trying to move it to the ‘closed loop’ stage.
He’s determined, he’s knowledgeable, he’s very resourceful.
I’m sure he will get there and I wish him good luck.
Moreover, I really hope to get to meet him properly one day and have time to talk.

But what about us?

I’m very behind a homemade open loop system for Amy, I’ve got no problem with that, although I can’t imagine it’s anything we’ll look in the coming months. It could monitor Amy and give suggestions as to TBRs to put on and with her knowledge of what else is going on she could choose to action those suggestions or not.
Her choice.
So, no ‘closed loop’ desire for us them.
But if it were me…I’d already have a closed loop system or be working towards it. I’d leap into this technology because after all I’m a computer programmer so I could tailor it.
Amy can’t do that and I won’t mess with her health.

As far as all of us in that room are concerned…. #WeAreNotWaiting

Further information

The Guardian article about Tim’s HAPP
Tim Omer’s HAPP GitHub

Medical Technology Awareness Week Reception at the Houses of Parliament

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Parliament from inside the gatesThrough INPUT Diabetes I got a chance to get to see the Palace of Westminster for the first time AND talk about diabetes tech to anyone prepared to listen. Two birds, one stone, what could have been better. Well actually I attended another great event afterwards too – blog coming soon – , so three birds, one stone, if that’s a thing.

The Medical Technology Group’s event yesterday was hosted by John Pugh MP and part of the group’s Medical Technology Awareness Week. The event sought to get people together discussing technology used to help people manage their conditions. Type 1 Diabetes is clearly a condition which has benefitted from the tech available, in fact it’s hard to imagine a life now without it. Of course I realise how lucky we are to have all this, in fact I realise how lucky we are to be able to get insulin without issue.

Matt and I travelled up together and arriving at Parliament all suited up I cursed ignoring his advice to borrow a coat as ‘it’s bound to rain’, as it did, just as we were waiting at security under a torrential sky; so I entered Britain’s seat of power drenched and dishevelled. Through security tighter than Paris last weekend and into the main Westminster Hall and meet our friend Alistair (Samuelson) and all took a sneak peak at the MPs discussing things in the House of Commons.

On the day before I left I tweeted to several MPs from my local area: Mim Davies MP as she’s my local MP; Caroline Noakes MP as she’s a neighbouring MP and I knew she had an interest in Diabetes; Suella Fernandes MP as she’s the MP for where I work. Suella was not in London that day but I was amazed to get responses from Caroline and Mim – am I allowed to refer to them by their first name, what’s the protocol here?
tweetdavies

tweetnoakes

The event was held in the marquee overlooking the River Thames, a marquee I’ve seen so many times from the other side. Collecting my badge I heard my name mentioned, an MP was here to see me. Crikey! Already?

I spent a good few minutes speaking with Caroline Noakes MP about Amy’s diabetes tech, talking about how Amy’s pump is life changing and she’d never give it back. Caroline has an interest in Diabetes, I’ve seen this often in media articles and events, and it made explaining things a lot easier. Unfortunately though Caroline had to go to speak in the Further Education debate happening in the House so our chat didn’t last long but I was very grateful for the chance to discuss the life-changing tech Amy uses.

Off to find the insulin pump table provided by Roche where Matt, Alistair and I chatted with Lesley (INPUT) and Philippa, whom I know from the #DOC (Diabetes Online Community). Philippa had been before and this time was one of the speakers; she admitted to being nervous and I knew exactly how she felt from when I did the Nightscout presentations a few weeks ago. I knew Philippa would speak well, she’s a very level-headed, knowledgeable patient advocate and hearing her speak I felt quite proud of what she was doing and saying. The audience was engaged, people didn’t leave the room, they didn’t shuffle about and whisper, they were held there listening attentively to her story, to effectively Amy’s story, to the story of many of my friends. I thought she could do with some praise from the #DOCPhilippa speaks at Parliament

mimdaviesMy MP, Mim Davies, returned for a chat and we spent a long time talking about the medical tech which is life changing for Amy, how we get some of it from the NHS and how we self fund CGM. I couldn’t help but show her Amy’s glucose readings on my Pebble watch and go into (probably too much) detail about how Nightscout is an unfunded parent driven group with 15000 worldwide families using Open Source software. Mim seemed quite impressed with the whole thing. We chatted in general about Type 2 Diabetes as through my research I knew Mim had recently met with Jamie Oliver about the sugar tax proposal and I mentioned that this would cost people with Type 1 Diabetes more as sugary drinks are also life saving medicine when hypo.

I loved this event and would encourage you to go to it or similar if you ever get the chance.

Vive le weekend, vive Nightscout, vive la France et très bien Amy

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DSC_2651This weekend saw Jane and I go away for the first time without the kids, celebrating Jane’s 50th birthday with a surprise weekend to Paris. Amy, Emilia and I had been planning this for ages, they were both happy to be left alone, probably happier than I was feeling about it if I’m honest. At almost 18 and almost 15 Emilia and Amy were more than capable of looking after themselves, Type 1 issues aside.

Thursday 12th November

As we sped into France on the Eurostar on Thursday night, I waited for the Fajita-induced glucose spikes to hit my Pebble watch with the data sent by Nightscout. I would have preferred that the kids didn’t start with the most evil of glucose-spiking meals on our first night away, but this was their choice and Amy knew it would need managing.

Nightscout for a trip like this was a Godsend, although typically our house WiFi had started going wrong minutes before we left the house and Amy’s phone had run out of 3G data allowance. Somehow a low 3.2 notification got to my phone and nervously I thought I’d check-in with Amy and request she check her level.

wpid-wp-1447652062790.jpeg

At 10:30pm, as Jane and I went out to a cabaret I bid Amy bonne nuit.

Friday

‘Bees?’ is my way of instantly making Amy laugh, it’s a Cards Against Humanity reference.
I meant to say ‘Miss’ not ‘Mid’

So I didn’t get to see the nice 22mmol she hit between 2am and 3am as the WiFi had stopped but Amy had managed herself really, really well.

Jane and I had a fabulous time on Friday, walking from our beautiful peniche for three nights on the Seine to Invalides and then to the surreal catacombs Jane wanted to visit – ugh! Then up Montparnasse at 5pm to watch the sun go down and the City of Light start to glow. On floor 59 we pulled up two seats and watched the Parisien lights appear before heading off to Bouillion Chartier for dinner.
At various times throughout the day I’d glanced at Amy’s glucose levels on my Pebble, she was doing a grand job.

Friday 13th, a night of terror in Paris

I checked my phone when we got back to the houseboat and saw this from my friend Carolyn
pleasecheckin
I checked in with Carolyn and got some twitter replies from other Twitter friends. We’d heard sirens, a lot of sirens, but had thought nothing of it.
Within seconds my thoughts turned to the kids and knowing Emilia was at work I messaged Amy.
message

Dozens of private messages had arrived via Twitter and Facebook, so I sent another message out:parispressrelease1

Saturday 14th

Amy’s glucose levels overnight had been good, Emilia’s (non-T1) on the other hand were probably another story: she’d been awake half the night worrying reading the newsfeeds.
As I fell asleep the night before we thought it was a single shooting or explosion, nothing like the devastation which actually took place. Only in the morning did we realise the extend of the night of terror Paris endured.

Logging in to Facebook it suggested that I might be in an area affected by the terrorism and asked two questions: was I there – yes; was I ok – yes. What a great idea this was, especially when I learned that Facebook friends had this information right at the top of their newsfeeds when they logged in.

Message upon message rolled in, phone call upon phone call. I put out numerous messages and set up a network of people all set to check in on the kids at various points throughout the day.
I guessed Amy and Emilia were still sleeping though; should I wake them, should I leave them sleeping? I waited a bit, I couldn’t wait long though to hear their voices.

A subdued Paris

With most of Paris shut down, hundreds of sirens going off and armed police roaming the streets I peered out of the houseboat’s windows and gazed upon an eerie silent Paris still moving. The absence of tourist boats made the river a quiet place but people were still jogging, cycling and living life on the Rive Gauche.
We spent the day walking around the silent Parisien streets using ghosttown Metros to get around. You couldn’t help but feel the sadness of the city.

Back to the kids

Even with everything going on, Amy and Emilia had dealt with everything brilliantly. We were of course remotely checking on Amy several times a day but with the odd nudge managed her glucose levels superbly over this trying period.
And the result?
Nightscout estimates over these 4 days she’d have an HbA1c of 6.0%.
Wow
4 days estimate

Presenting Nightscout at CWD FFL 2015 – the videos

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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.
httpv://www.youtube.com/watch?v=1kA5SIF1WKE
(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.
httpv://www.youtube.com/watch?v=Z1PxWPKmeCA
(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.
httpv://www.youtube.com/watch?v=f-0Ymz6SC6E
(Watch on YouTube)

Nightscout Workshop at CWD FFL 2015

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You might like to read the article about the morning’s presentation of Nightscout to families at the CWD FFL 2015 conference if you’ve not already done so.

Afternoon Presentation/Workshop

Nightscout UK teamIt seems the afternoon session was the only one actually listed in the FFL programme so we had more people, about 30, attending.
Like the morning session they were really attentive, most of them knew Nightscout already, they wanted it, they needed it and they thankfully had a lot of questions.

 
First we gave the obligatory warning that Nightscout isn’t an approved thing, it can’t be bought, it’s not something anyone would build for you, you should never make a medical decision based on information shown etc. etc..

After debunking the myth that this was a solution only available to nerdy geeks we showed the routes into Nightscout from a ‘How Do You Get Your CGM In The Cloud‘ article, quickly dismissing some of the USA-centric options like Share and focussing on using a Dexcom receiver, xDrip device or using the uploader for Medtronic CGM (not 640g).
Kate showed the original ‘rig’ where a phone is directly connected to a Dexcom receiver as this is what her family first used, but now they use xDrip.

xdrip circuit
xdrip1xdrip2

I presented the xDrip wiring diagram and hopefully quickly busted the myth that it’s hard to build. For me this was the easiest bit to present as I knew most of the audience just got it, for some the penny dropped during the presentation, for some it just reaffirmed what they already knew and thought.
People were keen to see some model xDrips so I passed my two spares to members of the audience, whilst Tim demonstrated the tiny one in a TicTac box which he wears on a band around his bicep which he prefers to do so he doesn’t forget it.
Jesus talked about the components required to build MMCommander to get CGM data from Enlites (for Medtronic 530 and Veo pumps) into Nightscout, which received a lot of interest from the audience.
In the last slide Kate spoke about the different cloud services which were required for a standard Nightscout installation: Azure, for the web site; MongoLab, where the data is held; GitHub, where the code is for everything.

Workshop session

Nightscout afternoon sessionsAt the start of the workshop session we split into two tables, one for Medtronic with Jesus, one for Dexcom/xDrip with Kate, Tim and myself. Stuart meanwhile helped one of the audience members sort out issues with her set up, she left with it working properly.
I spent most of my time showing the two of the different xDrips I’d built, fielding questions about the components or how to build them or issues I faced.

It’s hard to imagine how the session could have gone any better: people seemed to get the answers they needed; people seemed engaged; many said they would order the components that night and set up Nightscout as soon as possible.
From my point of view we had achieved our goal, that one family walked away from the presentation/workshop having discovered something they could set up to help them. But in this case it wasn’t one, it was probably 20 or 30.

Presenting Nightscout to Families at CWD FFL UK 2015

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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.

The German exchange trip – Amy nails it

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On Tuesday Amy, now 14, started her exchange trip with her school to another school in Germany, somewhere. As a parent I should actually know where she is but I guess I’m a bit more relaxed about this trip than I realised.
This blog was meant to be just about the trip but it’s turned into a congratulatory one for Amy, who’s doing really well managing by herself. I’ll kind of apologise for this but at the same time I’m incredibly proud of how she’s managing.

The trip

Amy’s been studying German at school for a year or so and on the face of it she is very good, getting A and A* results in exams. She’s staying for a week with a lovely family whose daughter will be staying with us in a couple of weeks and luckily she is very good at English as I know no German.
The school have organised all this, along with the host school organising a week long set of activities and fun events.

Never a doubt

There was never a doubt whether Amy would go on this trip or not, diabetes was not given a passing thought from our side, nor Amy’s, nor the school’s. It’s so refreshing to look back and realise it was never a thing, especially after hearing horror stories of kids not being allowed to go on school trips, some only being told at the last minute.

The Type 1 worries

Whilst Type 1 never featured in the decision making process about going on the trip, Amy, Jane and I felt that we should ask the school to see if any of the German kids have Type 1 and would like to stay with a family who were used to living with Type 1. Amy is more than capable than managing her diabetes on a day to day basis and she thought she could help any of the German Type 1 students if they were worried about coming to England and going it alone themselves. It was a lovely touch from Amy but we’re glad the German school has no kids with Type 1.
We did wonder if Amy’s host family would be worried at all but they raised no concerns once they found out about Amy having Type 1. I think they’re happy that their daughter is coming here as she has daily injections to do and the family will know we’ll be okay with helping her.

Helping other Type 1 kids

Of the English kids going there’s a boy who Amy doesn’t really know, let’s call him Harry*, who’s also Type 1, much more recently diagnosed than Amy. Amy thought Harry would prefer to stay with a Type 1 German family so whilst setting out to find out if there was a German student with Type 1 she was always going offer that family to Harry first. Another nice touch.
At the one and only meeting about the trip we stayed behind to discuss a few Type 1 things with the organiser and heard Harry’s mum nervously asking questions about the trip, worried about how her son would cope if anything went wrong. We’d never met the mum before, Amy didn’t really know Harry either, but she jumped up and said, “It’s okay I’ll give my mobile number to Harry and he can call me if he needs help in Germany”. She then explained that she was confident with carb counting, adjustments and day to day management and that the mum needn’t worry. Proud Dad moment.

So how’s it all going, glucose wise?

Amy uses CGM (Continuous Glucose Monitoring) on and off and is using it in Germany, on top of that we use xDrip and Nightscout for night time. We had decided to use it for Germany so that I could help Amy with her recent-ever-changing-basal-requirements but between lack of WiFi, phone 3G problems and being relaxed we’ve not actually worried about it. It was Amy who got it set up in the end and it was two days before I actually looked at the data so it was pleasing to see how well she is doing, without asking for advice or worrying or letting it stop her.

Germany NightscoutNightscout graph sample over 36 hours

From the 36 hour trace above, Amy’s averaging 6mmol/l, with maximum of 10.8 and a couple of hypos of 3.0 and 2.9. Not bad considering she was at a theme park and estimating carbs has been a challenge at times.

* some names have been changed to protect the innocent 😉

#PWDC15 – The People With Diabetes Conference – The Sessions

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Diabetes conference poster2015In the last post about PWDC15 I wrote about how I felt about the day and how it all started; in this post I’ll go into the sessions.

My main focus would be anything parent or carer related, diet related and teenager related and of course if I could match that up with some cycling talk that would be great. Within a couple of seconds of staring at the agenda I knew my first two sessions:
          Session 1 – Partners’ Moan, hosted by James.
          Session 2 – D in Teenagers, hosted by Marianne.

At some point I hoped to attend either the Food / Diet / Issues session or Low Carb.

pwdc15 agenda

Session one – Partners’ Moan

In fairness I was having too much fun chatting with people face to face so I totally missed the start of James’s Partners’ Moan session, rocking up late when there was no seats left, but luckily my wife let me share hers.
I’ve known James for a while and wasn’t surprised that he proved himself to be an excellent session host, with many things to ask and many (, many 🙂 ) things to say. The topics were varied and almost everyone in the room was engaged with the conversation touching all areas of living with someone who has diabetes.
It was sad to hear how some people – like me occasionally – have trouble sleeping because of worries about night time hypos for their partner/child and I offered a couple of ideas how to make things easier.
Some stories were funny, some were sad and others down right worrying and some very, very good points were raised by all. I found James’s thoughts particularly interesting, although in the interests of confidentiality we’ll keep these secret between the session attendees, James and his wife.
I realised part way through that there were two Type 1’s in the session but I’m really glad they came as it gave us carers/family a really good insight into how they see things; I’m pretty sure they also got a lot out of it.

Session two – D in Teenagers

In what turned out to be a theme for the day I was (fashionably?) late for this session.
I was pleased to see my wife Jane already in there along with friends Karen, Rachel and Marianne who I’d met for the first time earlier that day, after years of chatting on Twitter and Facebook. Another chap named Nick was there, he’d had Type 1 since an early age – it turned out I’d cycled with him last year in the inaugural TeamBG Cycle up Box Hill.
I’m so glad Rachel and Nick went to that session as without them we would have just been a few parents with still unanswered questions. Their stories whilst maybe a little worrying were evidence that things don’t need to always be spot on to turn out well in the end.

Lunch and time for Amy to shine

Vicki's picture of the xDripLunch-time came far too quickly but gave another opportunity for networking, saying hello to more people I knew from Twitter and Facebook, like chatting with with Rhodri and talking to Paul S about my recent work on xDrip, seeing Amy & Emilia quite relaxed whilst chatting and playing games with people they’d never met.
That for me was a lovely thing of the day, where people felt at ease to go up to Amy, introduce themselves and chat about stuff. Like Vicki who chatted with Amy about xDrip, and others who asked her how she felt about being ‘stalked’ with xDrip – for the record she doesn’t mind too much. Hey and look at that on the picture, 5.1, nice!

Session three – Low carbing (and a bit of cycling)

LCHF-dekal
…if you want to

Guess what, I was late for the start of this one too.
This session was hosted by Sacha, another cyclist I met on the TeamBG Box Hill ride last summer. We’ve bumped into each other quite a few times online since, especially in the low carb arena where he’s gone from strength to strength. Also in the session was Rachel & Andrew whom I’d met before and amongst others was Jeff who I’ve known for a while but never met before. Some guys from the sports nutrition company Torq were also there.
Sacha started the rounds asking people to say how many carbs they consumed a day on average and numbers ranged from 150 to 20, with the guys Torq stating that it wasn’t worth asking them, on account of the number they consume. Interestingly most agreed that the carb count shouldn’t normally include any sport fuelling for long rides. Discussions were had on foods that work, foods that don’t, tips and tricks – such as Jeff who goes for snacks of Pecan Nuts as “they’re cheap in Lidl”, in contrast to Sacha’s (and my) Macadamia Nuts which certainly are not cheap in Lidl.
I asked if anyone drank Bulletproof Coffee and kind of wish I hadn’t when I described it and saw the look of horror on their faces. I initially came back with a ‘it’s not as bad as it sounds’ before agreeing with Sacha that it was an ‘acquired taste’.
I really loved this session as I have never felt at ease talking about LCHF on Twitter or Facebook due to the fact that I’ve faced abuse because of it. In this arena we all shared the same aim and belief and it was good.

Wire free charging for your xDrip

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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:
httpv://www.youtube.com/watch?v=-KQeLmrH2B8

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.