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Quickest clinic appointment ever

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20190519, distribution cut downLast night’s clinic appointment was the quickest one ever, not that time is a measure of a successful appointment, but it felt really nice. Normally Amy has great chats and lot of time with her normal Consultant but this time she had a Doctor she’s only seen once, some time ago.

Other than clinic notes the new Consultant knew nothing about Amy’s history with the pumps, she’d never seen her/a DanaRS or knew that Amy has used DIY looping part time for a while now. (Amy’s not a fan of wearing CGM so has regular breaks from CGM/looping, her choice, it works well for her.)

As usual all the measurements were taken, then as soon as we’d sat down in the waiting room Dr L came to get Amy, who asked me to go in with her. She’s in transition clinic so naturally she takes the lead on whether parents go in, and she always wants us there, under no pressure I should add.

Dr L asks Amy how she is.
Amy feels good, explains her diabetes just started going well again after a worse time, without her doing any changes. She feels in control, everything’s fine.
Dr L: “That’s great. Do you have your Diasend reports, we had trouble accessing your account”
Amy explains we don’t really do that, we give them Nightscout reports as we fund CGM, so it’s better than a few BG checks per day.
Dr L hasn’t really seen Nightscout reports from us before, but we’ve given her a range of 1 week and 3 month reports (distribution/time-in-range reports, percentile (AGP-esque) chart, weekly success).
She’s pleased. “Look at those graphs, that night time section is really tight”.
Meanwhile the DSN asked if Amy was looping and after I nodded she explained to Dr L that Amy was looping with the DanaRS which she got in November. Amy estimated that she’s looped 60% or more of the time since December.
“These results are what we’d like to see for all our patients, well done.” said Dr L.

After the (not the most crucial thing but still interesting) HbA1C result was ready with its pleasing 0.4% drop since 4 months ago – which had dropped 0.4% from the one before – Dr L asked Amy some diabetes management questions (alcohol etc.), asked Amy if she had any questions (“No, I’m fine”) and we left.

20 minutes.
Still had to blooming pay £1.80 for the car park though.

London/Paris Fundraising – Win a Dexcom G6 Starter Park

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The raffle is now closed, the winner was Claire Reidy

Here’s a video of the draw being done…

eiffel and us before finish

Introduction

Us Diabetes Dads had a great ride to Paris, we’ve been back a few weeks now – yes, yes, I’ll do some videos soon. Hopefully some of you managed to follow the fun on our Facebook page – London To Paris Diabetes Dads.

Fundraising went so much better than we expected, topping £13000 so far – thank you, thank you, thank you – but we’ve got something left before we close the fundraising down…

Dexcom has generously donated a starter kit for the brand spanking new and shiny Dexcom G6, which 900 of us UK people saw this week on Dexcom’s release webcast.

If you’ve already donated to our ride already you can still enter this raffle.

What’s the prize and how much is an entry?

Up for grabs is one Dexcom G6 starter kit worth £159 (exc VAT), which consists of one G6 transmitter and three sensors. It’s enough for you to trial G6 for 30 days if you use it continuously, or 3 lots of 10 days if you don’t. The transmitter will last longer if you decide to buy more sensors afterwards.
The G6 is a vast improvement on any previous Dexcom product, and let’s face it they were pretty damn good. It doesn’t need calibrating, it lasts officially for 10 days, it’s slimmer and its inserter doesn’t scare the daylights out of you.
Entry is £5 for one chance. If you wish to have more chances you can – just like you would when buying multiple raffle tickets – you just need to donate multiples of £5 when you enter.
DexcomG6
(Note: it’s only the transmitter, the sensors and the inserter you get, no phones, no watches)

 

How do you enter?

NOTE: This is open to UK residents only.
Read all this stuff below then head over to our ride’s JustGiving page to enter, see link at bottom of this section.
On our Just Giving page donate £5, or multiples of £5 to get more chances.
Make sure your name is correctly set up, so that we can announce the winner in July.
DO NOT SELECT GIFT-AID.
You will need to go back to the JustGiving site on 20th July to check whether you’ve won.
IMPORTANT:Please let me know you’ve entered via Twitter or message me via Faceboook.
Okay, now click this link: A Dozen Diabetes Dads Do London to Paris

When is the draw and how will it be done?

After the World Cup finishes we will collate a spreadsheet of people who have donated a multiple of £5 between 16th June 2018 and 15th July 2018.
If you’ve donated £5 you’ll get one line in the spreadsheet, if you’ve donated £500 🙂 you’ll get 100 lines in the spreadsheet.
The winning entry will be chosen by placing each entry into a bowl and chosen at random.
The winner’s name will appear on the Just Giving site and here once the draw is over, details should be published by 20th July.
PLEASE COME BACK TO CHECK WHETHER YOU’VE WON AS YOU WILL NEED TO CONTACT US TO GIVE US YOUR FULL CONTACT DETAILS.
We will pass the details of the winner to Dexcom and they will contact the winner to arrange delivery of the shiny new G6 starter kit.

Here’s some raffley legally stuff

This online ‘raffle’ is legal because JDRF now hold a Small Society Lottery registration with their local council, Islington, it’s reference LN/18477-100518 if you’re interested.
To be honest it’s taken us ages to get this licence, and we’d wanted to do this ‘raffle’ before we rode to Paris but getting it right (and legal) was important so we just had to wait until now. But as a bonus the offer is now for a G6. Woohoo.

Here’s an incredibly important disclaimery type thing

Dexcom has provided us with this chance to increase our fundraising.
They want nothing in return and never actually expected us to be in a position to raffle it online, but now of course they’ll get a little marketing in return, but that’s not something they expect.
Kudos to Dexcom for helping us with our fundraising and special thanks go to Gerald and John for helping us.
Dexcom has also giving us this opportunity knowing full well that half of the Dads on the trip as Nightscouters. It’s refreshing we’re still friends and can talk openly.
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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.

Guest blog: #FreeToDream with Abbott’s Freestyle Libre – by Joanne Hallsworth

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libre heart

Amy and I recently got an invite to attend Abbot’s FreeToDream event as bloggers but unfortunately we couldn’t attend, so I offered Abbott the opportunity for any of the attendees who wanted to to write a guest blog about their use of Libre or the FreeToDream event.

DISCLOSURE:
Abbott have had no involvement in this article, the words are Joanne’s and only Joanne’s.
No goods/money/services have been received for this article, but in true transparency I can say that Amy will be doing a trial of the Libre and we will blog about that later.

Anyway, here’s Joanne and her story, in her own words…

Our family

Firstly I wanted to introduce my Family. My name is Joanne, I have a husband Graham & we have 3 fantastic kids; Morgan who’s 14, really smart and loves cheer leading; Lily, who is 13 and a competitive gymnast; Archie “the warrior”, who lives and breathes lacrosse and loves being outdoors.
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Morgan

12919591_10207972851532039_1219485698_oMorgan scans her Libre sensor

When Morgan was in year 6, aged 10 ¾ she was diagnosed with type 1 diabetes. It was such a shock I can’t tell you! I didn’t even know what diabetes was if I am honest. At the time I was working full time for Northpoint Mortgage Lenders as a mortgage advisor, but the reality of having to learn all about the illness, the demands, the time off needed, understanding carb counting, insulin ratios and all the new technology that went with diabetes, and not to mention the grief of the life I thought it had taken from her.
It was too much, I gave up work to be the best carer I could be and worked hard to achieve the best outcome from anything the hospital would give me. I read everything, I joined a support group and I took every opportunity to make it as easy for Morgan as possible.
I managed to get in some kind of routine after a year, and found we had accepted it and it would not define her. We got her on a pump and even tried Dexcom from the hospital, but to be honest when we took a well-earned family holiday, the alarms nearly drove me crackers!

Archie

12915081_10207972852492063_353426253_oArchie finds it easy to scan his Libre sensor

In June 2012 Archie wet the bed a couple of times (he had been dry since he was 2), I did a quick keytone test as anyone who is ill in my house gets one! But I never expected it to be positive, he was 4+ and a further blood sugar test on Morgan’s meter scarily showed he was HIGH, not even reading what a lab test told us later was 33mmols! My husband was in shock, he kept saying it couldn’t be true.
Archie was scared and by midnight we were in bed in the treehouse at Stepping Hill having those first doses of insulin! He coped amazingly doing his own first jab within 24 hours and I asked to go home straight away the next day so we could process it as a family. The scales were already in play in the kitchen and the double carb counting began.

Trying Abbott’s Freestyle Libre

12896479_10207972851852047_1555823320_oMorgan checks her glucose levels over the last 8 hours

The sleepless nights have been horrendous, if one is high the other is low, I check them about 3 times per night, but it’s OK because sleep is for wimps !!
A friend told me about Freestyle Libre so I instantly read up and liked what I saw. I put my name on the waiting list and hoped for the best.
We were the most excited we have ever been to see the postman when it arrived.
I wish I could say we didn’t love it straight away – because it was so expensive – but we did.
Almost immediately it became a permanent fixture for both children.The knowledge was power instantly. Seeing the graph that was like a mountain range at best, it was a challenge, so I rolled my sleeves up and got stuck in, a bit at a time working out why it was high or low, picking away at it to make it better, taking back some control. We started pre bolusing breakfast a few minutes a day till we lost the spike and just carried on from there.

Money well spent

A recent high point was Archie’s hospital appointment where the consultant looked in awe at the flat night graphs for 5 days in target range and reported that his HBA1c had dropped from 60 to 52 – all the money we had spent had been worth it!
Morgan’s first appointment went well too – HbA1c has dropped from 69 to 62 (7.8%) – she loves the FreeStyle Libre – proudly doing corrections to achieve a better graph and beat Archie!

A quick video of Archie having a new sensor put on
httpv://www.youtube.com/watch?v=iT3FNRUxqUY

The FreeToDream sleepover at the London Planetarium

12899506_10207972852292058_1159590851_oArchie scans again, it’s so easy

The icing on the cake was a message from Abbott Diabetes Care, saying that Archie has been selected to join an educational sleepover, the first I am aware of for children with type 1 diabetes, at the London Planetarium! I didn’t even tell him I had entered because I can’t even win a cracker! I couldn’t wait to pick him up and tell him. He has always wanted to go to London so even this was a dream come true for him but it was so expensive to take the whole family. So we ordered an oyster card, studied the tube map and off we went.
When we arrived at the Planetarium diabetes suddenly became the new normal, sugar free drinks on top of the table, hypo drinks below, everyone counting carbs and doing injections. The FreeStyle Libre came into its own again as Archie kept me updated with his scans and couldn’t wait to get off with his new friends and join in the fun. The trip to the stars was sensational, I don’t know about Archie but I felt as excited as a 10 year old after that!
The kids escaped to play games and carry out science experiments, and we found out about the problems we may have with teenagers living with type 1 diabetes. It was hard for some to hear but having Morgan, although she is very sensible, gave great insight into the teenage diabetics mind.
Night-time at the Planetarium was no different to my house, we started with a hypo and soon settled after a bit of Lucozade and a sleepy biscuit.

So in conclusion…

The relief of having a 10 second blood sugar with no pain can’t be measured, and I will do anything to keep it for them.
Archie’s FreeStyle Libre has given him freedom to take control over his diabetes. He can play lacrosse safely 3-4 times per week, as with a quick scan and a jelly baby there is no stopping him.
I can do three lightning scans a night spread over 2 bedrooms and get back to bed before the pillow goes cold.
And Morgan can check her blood quicker than her snapchat!
It’s all good here!

Diaversary #5

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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.

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.

Dr Ponder’s Sugar Surfing Workshop at the JDRF Discovery Day

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Dr Ponder's WorkshopIt’s taken me a lot longer to get started on this article than I would have liked but actually it’s done me a favour as Julia has already written a brilliant blog all about it, so I’d suggest you have a good read her article Sugar Surfing with Dr Stephen Ponder MD

So I won’t repeat what Julia’s written but just talk around some of the rest of the event…

The most eagerly awaited Discovery Day?

Over the last few weeks the buzz around last Saturday’s JDRF Discovery Day has been getting stronger and stronger, everyone excited to meet Dr Stephen Ponder in person and listen to his introduction to Sugar Surfing.

On Thursday after I’d interviewed Dr Ponder for Diabetes UK he asked me what to expect at the event and I told him:
“There’s a long waiting list for this event, people are travelling hundreds of miles, some are coming from France just for the day, Twitter and Facebook are buzzing. I expect that you won’t hear a pin drop during your presentation.”
He told me he was excited to be able to present to all of us.

Blasé about travel time

In true Winchcombe style we were running late which annoyed me as I had so many people I wanted to meet and chat with. I blame myself, this was my third time in London this week and it’s “just up the road” (80 miles).
This was the only downside to the day, I wish we’d left earlier so I could spend time chatting with people like Helen & Andy and especially Kevin and Julie as they’d both travelled from France – not together I hasten to add, just to dispel any rumours 😉

A Discovery Day like no other

On arrival we had to sign in, nothing unusual there, except we were in a long queue and there were hundreds of people. Immediately I spotted a few familiar faces whilst I looked around for those I’d been dying to meet; Kevin, Julie, Helen and the legendary Dave Berry. (Dave’s a legend amongst us Diabetes Dads on the CWD UK Dads Facebook group)
I’m sorry to all the people who came up or called out ‘Kev?’ if I didn’t recognise you immediately but my mind was a whizz playing a nanosecond game of ‘Guess Who?’.
In all honesty I really needed this Discovery Day to have about fifteen 30 minute coffee breaks in it, just to have time to talk to people.
It was a delight to hear the joyful screams of people who met for the first time, after keeping each other company through the dark times and middle-of-the-night glucose checks.
This is one hell of a community.

Before the start

I milled around chatting to some online friends I’d never met before, before I spotted Dr Ponder who was busy book signing. ‘Kev’ he said ‘how great to see you again’ which I guess means my interview with him a couple of days before didn’t go badly. Before he had chance to introduce me to his co-author Kevin McMahon they were all called in to the hall as everything was just about to start.
Luckily I found time to have a good chat with Kevin during the main interval, he’s a truly outstanding character with an all encompassing knowledge which stretches far further than mine and I’m a little envious of his endorsement from Scott Hanselman on LinkedIn. I wished we’d had more time to chat.

Feeling sorry for the first speakers

JDRF Discovery Days always have a couple of people speaking before the person who does the science bit and normally this works well but this time I felt sorry for them as in the nicest possible way the audience’s silent ‘Get off’ was deafening.
Elle Dormer was introduced and she spoke about how she had found Dr Ponder online, instantly connected with what he was saying, then attempted to get JDRF and Diabetes:UK involved. I’ve never met Elle before but I imediately took a shine to what she was saying and how she felt, that was until she had a dig at D:UK, I ain’t got time for that, it’s a pet hate of mine and others, because I know that they are the only charity truly able to provide personal support & assistance with school / legal issues for people with Type 1. I know that D:UK, due to personnel issues, had dropped the ball on this one and feel quite bad about it, perhaps Elle didn’t know that though.
Elle, if you’re (still) reading this can I personally thank you for all you’ve done to organise the events for Dr Ponder. You’ve done the community proud. Thank you.

The Sugar Surfing presentations

As Julia’s documented this so well please read her blog for more information: Sugar Surfing with Dr Stephen Ponder MD.

The ultimate way forward?

After my interview with Dr Ponder – or Steve as I like to call him now – on Thursday I was already totally sold on this being a good way forward if Amy chooses to want to do it. That’s why I took her there, so that she could find out information about other ways of dealing with her diabetes. For the record she didn’t really want to go, she had a million other things she’d rather do, as is the way with teenagers, but she went and learned quite a lot. On top of this it reinforced that the things she was doing already were good.
As a family we’ve looked into lower carb eating to minimise glucose spikes and it’s easy to see that it doesn’t suit Amy as a full time way of eating, therefore I see Sugar Surfing at the next best thing. In fact it’s clear to me that a relaxed combination of the two is a very good (but not the only) way forward.

The post-presentation buzz

So many people I spoke to at the event or online afterwards have said how much sense it all made, how there were doing some or all of the stuff already, how they can see that with only some minor changes their kid’s or own hBa1c’s could improve…although obviously whilst that’s a good measure it’s not the be all and end all.
I get the impression from some that they learned nothing, that they did all of this already and that’s great as that means they’ve been Sugar Surfing for some time, that they’ve realised that these little and constant adjustments work well.
For me Sugar Surfing tells us that it’s okay to do this, that we should experiment, that we should approach diabetes management with an agile mind, that we should find what works for us, that we can always learn and improve.
More importantly in confirms that concrete thinking is not the way forward.

Thank you

I’d like to personally thank Team Ponder (Dr Ponder, Kevin McMahon, Patsy, Mackenzie and others) for doing everything they’ve done to get Sugar Surfing in print and for the presentations given on Saturday.

And finally

If you’re interested in learning more about Sugar Surfing please visit SugarSurfing.com and join the Sugar Surfing UK Facebook group which James set up on Saturday.

A slidedeck similar to Saturday’s slides can be found here: Sugar Surfing Master Slide Deck August 27

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 😉

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.

xDrip Test Results (vs Dexcom’s 505 algorithm)

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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

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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.

httpv://www.youtube.com/watch?v=Xv0PuM7dnYo

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

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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.

httpv://www.youtube.com/watch?v=YVGqzYRQXkk

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.

Dexcom, Nightscout and xDrip – how does it all work together?

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

 

xDrip Nightscout diagram v5My last three xDrip posts (introduction, components and building) have generated a few questions of which device, phone, cable or application goes where, so I thought I’d create a graphic of how I see it all working (well) together.

Scroll down for the large version of the graphic…don’t try and read that one on the right 🙂

Here’s a key to the graphic to help you see what comes from where:
Dexcom G4 CGM system
The Dexcom G4 continuous glucose monitoring system which Nightscout and xDrip are currently based on.
Nightscout
A full system of interfaces, cables, phones and applications to pull Dexcom glucose values from the Dexcom receiver, upload the data to the Internet and allow remote CGM monitoring via websites, phones, smartwatches. Designed and developed by people within the collective of Diabetes Parents who now front the Nightscout Foundation
xDrip
A do-it-yourself device and applications to retrieve data from the Dexcom CGM, using an independent algorithm to calculate the glucose reading, upload values to the same Internet database as used by Nightscout, to allow remote CGM monitoring. There is also a separate app (Nightwatch) which retrieves information from the Nightscout web site and relays info on to a smart watch. Designed and developed by Stephen Black.
Mongolabs.com
A cloud-based database solution, used to store the CGM readings uploaded by either the Nightscout Uploader application or the xDrip application.
xDrip Nightscout diagram v2
 
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.