Basingstoke Type 1 Diabetes Awareness Evening 11/03/16

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

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

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

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

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

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

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

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

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

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

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

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

A Dummy’s Guide to Building an #xDrip – #WeAreNotWaiting

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

 

If you don’t know what a xDrip device is take a look at this page.

AdaFruit charger magnifiedI was tickled by someone on Reddit who linked to yesterday’s blog about the components required for a xDrip which was entitled “An “Amateur” builds a module for DexDrip”. So here it is, this amateur’s guide to building an xDrip/DexDrip. (The article actually referred to DexDrip as that what xDrip was called at the time.)

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

A baptism of fire heat
Although I received lots of offers of help to solder the components together the guys at work told me I’d have no trouble doing it myself, so I decided to try.
First I ordered the soldering kit (iron, solder, stand, helping hands, solder sucker) from eBay and a practice board to train myself with. The ‘helping hands‘ turned out to be worth their weight in gold.
I soldered my first pin, inspected it and then soldered three more, choosing to solder them right next to each other as it seems that a common problem for amateurs is putting too much solder on. With four pins soldered I tested everything for continuity issues, to make sure no excess solder had spilled on to the adjacent contacts and shorted anything out.

practice board face uppractice board face down
So far, so good.
AdaFruit LiPo charger and batteryAttach LiPo-charger connector to battery
My AdaFruit LiPo-charger came with a connector, my battery came with a connector; they weren’t the same.
First job then was to cut the wires from each and solder the battery wires to the LiPo-charger connector.
NOTE: some people remove the connector terminal on the LiPo-charger and solder directly onto the charger board, I didn’t fancy this as I like to be able to disconnect batteries and swap them easily.
DO NOT connect battery to LiPo-charger.
AdaFruit charger magnifiedSolder wires to AdaFruit charger
The AdaFruit Li-Po battery charger then needed a power (red) and ground (black) wiring up.
For my first try I soldered a four-piece-header-pin to the board and used jumper wires to connect to it, but within a week I removed the header pins & soldered the wires directly onto the PCB.
1. Red wire, solder on to 3.3v (marked as BAT on mine), first on the left as we look at that board. Make sure you don’t solder on to the 5v connector.
2. Black wire, solder on to one of the GND connectors, for ease I chose the 3rd from the left.
WIXEL bluetooth wiresConnect wires for bluetooth module to WIXELWIXEL face down
Prepare four wires (red, black, green, blue) with one female header pin at one end and bare wire for soldering at the other.
1. Black, solder to GND
2. Red, solder to 3V3
3. Blue, solder to P1_6
4. Green, solder to P1_7

Other possible options: The header pin option is the simplest way to connect from WIXEL to HM-10.
The hardest (but not too bad) option is to desolder the HM-10’s header pins, then solder wires with two bare ends onto the WIXEL and to the HM-10.
The middle option is to solder wires with two bare ends, one end onto the WIXEL and one bare end onto the relevant header pin on the HM-10. Whilst this might seem easy I think it’s simpler to desolder the HM-10s header pins as above.

WIXEL and BLEConnecting the HM-10 Bluetooth moduleBLE face down
What you do next depends on what you chose to do on the ‘Connect wires for bluetooth module to WIXEL’ step:
If you soldered wires with female header connector at one end when you did the step above then all you need to do next is to slide the correct colour wire’s connector onto the correct HM-10 pin as per the diagram here.
If you soldered wires with two bare ends and left the header pins on the HM-10 then you need to solder the bare wire ends to the correct HM-10 header pin as per the diagram here. This is tricky to do (for me) but not impossible as I found when I made a second xDrip. I choose to wrap electrical tape around each soldered pin/wire afterwards.
If you soldered wires with two bare ends and removed the HM-10 header pins then just solder the bare ends onto the HM-10 as per the diagram here.
WIXEL power wiresSolder LiPo-charger wires to WIXELWIXEL face down
With the LiPo-charger disconnected from the battery (and micro-USB power) you now need to solder its wires to the WIXEL.
Red, solder to VIN
Black, solder to GND
 
The finished product
Hopefully by the end of it you’ll have something that looks like this:
20150109_205710
Note: the picture shows header pin connections for the AdaFruit Li-Po charger but I’ve now soldered the wires directly to the board, it now has a much smaller footprint.
 
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#WeAreNotWaiting thanks to #xDrip – Introduction

xDrip logo on left, Nightscout logo on right
As you can see xDrip loves Nightscout
NOTE: xDrip used to be called DexDrip so you might find some references to the old name in this article.

 

Okay, I’ll own up, I know I shouldn’t be so excited about this but I am.
This is a game changer, for us and many, many more.
It proved its worth within 24 hours when I saw Amy was hypo whilst sleeping (see below). Amy wouldn’t have woken up and tested her blood glucose for another 4 or 5 hours but by having xDrip working I saw that she needed some glucose tablets to raise her blood glucose levels. 5 minutes later she was back asleep…for four more hours. #Teenagers!

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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.

partially made up xDripSo what is xDrip?
xDrip is a combination of a device and a software application which receives data sent out by a Dexcom G4 CGM transmitter/sensor and displays the glucose readings on an Android phone. The app can also upload it’s data for use by Nightscout, which in turn means glucose readings are available on the internet via a PC/Mac, phone or even a smart watch (Pebble etc.).
xDrip is made up of two things:
1. The first is a do-it-yourself device, made up of four components which you can buy off the Internet and solder together. Total price is about £40 including battery. (That’s a partially made device on the right).
2. The second is the xDrip application which runs on Android phones (4.3+above with Bluetooth Low Energy (BLE) support). The app uses the xDrip device to read the output from a Dexcom CGM (continuous glucose monitor) sensor/transmitter. xDrip links up to existing Nightscout databases. The xDrip app can feed the data to a Nightscout database, which in turn means the data can be accessed via the Internet practically anywhere, using a PC/Mac, laptop, smartphone (Android/IOS/Windows) or better still a SmartWatch.

Wait! What? Nightscout? BLE? CGM? Dexcom? Animas?
Okay, it’s probably a good time to go over some of the common words I’ve used in the article. I’ll presume you’re already aware of insulin, insulin pumps, glucose levels and the world of Smartphones.
Animas – Animas is a company that makes insulin pumps. My daughter Amy has been using one of their pumps – called the Vibe (yeah, yeah, I know!) – since since June 2013. We chose the Animas Vibe specifically because of it’s use of Dexcom’s CGM system, although it turned out to be a whole year before we got the chance to use CGM.
BLE – is a version of the Bluetooth communication protocol which uses a low amount of energy, which means devices can work for longer without charging. Android has built-in support for BLE from version 4.3 onwards.
CGM – Continuous glucose monitor. A device which regularly samples the glucose level of its wearer, sampling the glucose in the interstitial fluid, not the blood. If you’re new to CGM perhaps take a look at this blog of mine: CGM: we’re live with Animas/Dexcom.
CGM-in-the-Cloud – is a term for any CGM which can be connected to a web site to allow for remote monitoring of someone’s glucose levels. It’s pretty big in USA, not so much over in Europe. A big player in this is Nightscout (see below).
Dexcom – Dexcom is one of many manufacturers of CGM systems. We use Dexcom because it’s linked with Amy’s Animas Vibe pump, if we’d got a Medtronic pump we’d use their Enlite CGM system. One benefit of Dexcom’s CGM appears to be that the sensors last longer – which is a big thing for us (who pay for CGM ourselves) as it lowers the total cost of using CGM. For the record I don’t believe Dexcom is any better than the new Medtronic Enlites.
Nightscout – Nightscout is “an open source, DIY project that allows real time access to a Dexcom G4 CGM from web browsers via smartphones, computers, tablets, and the Pebble smartwatch. The goal of the project is to allow remote monitoring of the T1D’s glucose level using existing monitoring devices.” In short Nightscout and the people behind it are awesome.

Who should we thank for xDrip?
Not me that’s for sure.
xDrip is the brainchild of Stephen Black, who was recently diagnosed with Type 1 Diabetes. With the help from others in the CGM-in-the-Cloud community Stephen has designed the xDrip device and written the software.
I think he deserves a big round of applause.

So how does it work?
SmartWatch
  • Dexcom sensor reads glucose level
  • Dexcom transmitter sends out data from sensor, like a split second radio broadcast
  • The xDrip app (on Android phone/tablet) controls the xdrip device to listen for and receive the Dexcom data.
  • The app displays information about the person’s glucose levels now and over the last day or so, indicating whether it rising or falling or staying level
  • If required the app can upload the data to a Nightscout database. We didn’t do this initially but set it up within the first week.
  • If using Nightscout parents (etc.) can view Nightscout info on a PC/website/smartwatch, like on the right. I’ve seen some great pictures of parents looking at their kid’s glucose level being displayed on the parent’s Pebble watch whilst the kid does some activity with their friends.
  • A further step is the use of another Android/smartphone application named Nightwatch, also written by Stephen. It relays information from the Nightscout data onto a secondary phone and potentially on to a smartwatch.

That’s Stephen’s SmartWatch above/right, showing the glucose levels on mg/dl (so don’t panic UK people).

Stuff you’ll need before using xDrip

  • Dexcom G4 CGM system, including transmitter and sensors.
  • An Android phone or tablet running version 4.3 or above and the ability to use BLE.
  • Components for the xDrip device (Wixel (£14), LiPo battery (£6) and charger (£6), BLE module (£15) and some wires to link it all together.
  • A case to put all the components in. (Yes I really must buy a case soon.)
  • A soldering iron or a friend/relative with one. I bought one off eBay for £12 including the iron, solder, iron stand/sponge and magic hands with magnifying glass.
  • A bit of patience. I didn’t have any but on reflection it would probably be a good thing.

In this next blog I detail the components I bought, which are pretty much the same components Stephen Black (the creator of xDrip) used.

Is this really a do-it-yourself project?
Yes. Definitely.
Before starting on this project I had never soldered any electrical components, I even had to buy a soldering kit specifically for this. Fair enough I program computers for a living but in this case my knowledge actually hindered my progress as I looked for a complicated solution to a problem I didn’t actually have. Luckily Stephen was on hand (via Twitter) to help me through it.
Soldering wise I’d say I spent a couple of hours in elapsed time making up the device, but that’s only because I was taking it very slowly to make sure I got nothing wrong. I’d imagine anyone with soldering experience would have this done in a few minutes.
If you don’t feel you can solder the components together why not ask a friend, relative or colleague?

xDrip's first 'catch'A real life example
With the xDrip device in Amy’s room, we checked that our tablet’s xDrip app could communicate with it when in our bedroom and also when downstairs in the kitchen; it could.
Off to bed we all went, everyone drifting off quick quickly, except me as I was busy staring at a tablet mesmerised by the information in front of me. (I really hope that’s a first night thing!)
At 7am I woke up and went downstairs, taking the tablet with me but not looking at it, placing it on charge in the kitchen, underneath Amy’s bedroom. I heard a noise and presumed it to be a mobile getting a Facebook notification or something. Then it happened again.
I realised it was Amy’s Animas Vibe pump vibrating to tell her that something wasn’t great, it was right she was low. Amy was fast asleep with the pump lying on the mattress beside her, she couldn’t feel it, it didn’t wake her. On the other hand I was in the room underneath and heard it, the vibration going through the mattress, down the bed itself, onto the floorboards, through the joists and onto the ceiling below!
So I checked the tablet and saw the image on the right. I waited 10 minutes to see if her level improved – it didn’t – and went up to wake her to give her a few glucose tablets. Amy went straight back to sleep, I went downstairs happy that she was no longer in danger.
Twenty minutes later I was pleased by the 5.5mmol showing on the xDrip app.

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Interested in what components you’ll need to build xDrip? Then read this: #WeAreNotWaiting thanks to #xDrip – Components Required

Blogaversary 2 on World Diabetes Day 2014

Spinnaker Tower on World Diabetes DayIt’s hard to believe yet another year has gone by in the Diabetes world, here’s a little bit about what’s been going on.

But first, it’s my blog’s birthday; 2 years old today (well actually yesterday but let’s not worry about that minor fib). Its visits have doubled since the first year’s statistics: I’m pretty darn amazed with that. What really pleases me is that I can see from the stats that people have searched Google and found the answers in my site, that’s kind of why I started it in the first place.

In December 2013 my daughter Emilia decided to take part in the TrialNet study at Bournemouth. It was two long months before we found out her results (and mine) were negative which pleased us, although we were saddened to hear that a friend’s result was positive.

Christmas and Amy’s Diaversary (29th Dec) came and went and her 6 month old Animas Vibe insulin pump made life easier during the festive period.

Amy and KevEarly in the new year I started my shifts as a national peer supporter for Diabetes UK, answering phone calls once a week and helping people find solutions to problems, or giving them ideas from the experiences we’ve had in the family. It’s proved to be really rewarding.

AccuChekInsight1March was a whirlwind on a particular day, the 15th, which saw us have two back-to-back diabetes events, doing their impressions of buses and policemen (none around, then there’s two). The first was an education day held by the local Type 1 families group Seahawks where amongst many other things I got to check out Roche’s latest pump, the Insight. It a great event and I was sad to rush away from just after lunch. But rush we must as Amy was doing a sponsored Indoor Skydiving in aid of JDRF along with lots of kids we knew pretty well; she loved it, every minute of it.

dblogweek squareIn May I joined in with blog week and I remember how nervous I felt when releasing my poem for Tuesday’s entry: A Childhood All Gone. It turns out I needn’t have been so nervous and I think that’s turned out to be my most favourited/Retweeted/Liked blog post ever.

flatline-dayEarlier in March Animas got the green light for use of the Vibe pump with Dexcom CGM for children, something we’d be waiting for since June the previous year. One year after getting her pump Amy went live with CGM and what an eye-opener that turned out to be.

twitteravatarJune also saw me cycling 100km around London overnight with a group of friends in the Nightrider charity event, where my local group of 8 raised £2700 for JDRF. On the plus side the training for it and switching to a healthier diet has also seen me shed 1.5 stone.

My personal highlights for this last year though involve each one of my kids. First Amy spoke in front of hundreds of Paediatric Health Care Professionals in a transition chat set up by the wonderful Dr Kar from QA Hospital in Portsmouth. Secondly, it was Emilia’s prom and a combination of pride and tiredness (from Dad-taxi pick ups at 3am) made me quite reflective: The Forgotten Sibling.

A great start to using CGM to get the bigger picture

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

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

A screen full of information

flatline-day

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

An opportunity for experimenting and learning

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

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

Analysing the averages

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

diasend

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

The foundations need some work

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

Portsmouth’s second SweetMeet – another privileged invite

amyprize2Amy shows off the carb counting scales she won at the SweetMeet

In the middle of a busy weekend – clinic yesterday, TeamBloodGlucose cycle ride tomorrow – Amy and I had an invite to the second SweetMeet organised by the team at Portsmouth’s QA hospital. For us it was another privileged invite being personally invited by Dr Partha Kar for the second year running.

Amy and I met Laura and Tanwen as soon as arriving, then with a breakfast bacon butty in hand had a nice chat JDRF’s Sue and DRWF’s Lee. Helen the pump rep from Roche was there and to our surprise our Animas rep Emma arrived, pleased to see Amy and to hear that she was getting on well with her Dexcom CGM, which Emma trained us in only two weeks ago. It’s really lovely coming to events like these and knowing so many people, it’s like one big family.

Kicking off with a great team

SweetMeet2 was officially opened by Lisa who referred to herself as just a nurse before introducing the team who had given up their spare time. With the plan for the day read out Dr Partha Kar stepped up to start the day off, but before doing so he praised lead nurse Lisa for the dedication and hard work she puts in keeping the department running.

66 years and the future

nhs creation leafletWith the NHS being formed 66 years ago to the day Partha outlined the changes in the NHS and in particular funding, explaining that funding had been matched to requirements from 1948 until a few years ago when funding plateaued, starting a funding gap which is unlikely to close any time soon. But there is hope and it will be found by making sure the right people perform the right jobs, freeing up the Wizards (Consultants) by getting the Gatekeepers (GPs) to perform the tasks they can – these references coming from Nigel Mathers and Paul Hodgkin’s 1989 story about the NHS “The Gatekeeper and the Wizard”

Speed-dating with the professionals

Next up it was time to speed date with the professionals, with the audience staying at their tables and professionals moving around the round to ask/answer questions during each 7 minute slot. Seven minutes goes very quickly when questions are being asked and it’s amazing how much you can cover during that time.
The podiatry and retinopathy sessions explain a lot about the processes that we know very little about and gave answers about what you should expect (nerve tests on bottoms AND tops of feet) and by whom (GP surgery nurse).
Partha did a session and an important message came across: people can and should help themselves, a message I’ve lived by since discovering the #DOC (Diabetes Online Community). The bigger question though is how to get those not already engaged to become so as those at the SweetMeet were clearly engaged already.

My favourite speed date

My favourite speed date – this sounds awkward 🙂 – was with Dr Iain Cranston, who chatted about Abbott’s Flash Glucose Monitoring, something I’m looking forward to being announced officially in September at EASD in Vienna – like many I’ve had an invite to go but can’t quite justify it. It has the potential to revolutionise finger-stick tests as it promises to do away with them, instead relying on swiping a NFC device across a sensor which is changed every two weeks. I didn’t think much of this technology initially but when I realised that it stores the last 8 hours of tests I realised it could be used as a non-alerting CGM, which is just fantastic. Fantastic that is if Abbott pitches it at a price to rival meter strips.

Breakout session 1: are all carbohydrates equal?

This year saw the introduction of two breakout sessions, with Amy and I going to the one of carbohydrates.
With a session of 45 minutes, 15 people and two dieticians it was like being a kid in a sweet shop, although obviously the first rule of SweetShopClub is that you don’t talk about sweets in front of dieticians. 🙂
Starting off with some simple carb-counting we moved on to GI which raised some interesting discussions, based bolusing for low-GI and wave bolusing techniques for pump users.
It was the first time I’ve been able to talk sensibly with a dietician about LCHF (low carb high fat) diets, their effect/usefulness and more importantly whether they’re suitable for kids, or can be adapted to be so.

Breakout session 2: new developments for type 1 diabetes

Dr Iain Cranston held our second breakout session which started with us all stating the new developments we wanted to know more about. With islet transplants and stem cell research already on the board (two things which could go hand in hand to get people off insulin) I offered a couple of other things: smart insulin and inhaled insulin.
Dr Cranston’s knowledge of developments is great and filled us all in on each of the developments, answering my questions about beta-cell replacement whilst super-T cells still exist.
How often do you get the chance to ask questions like this, that’s the beauty of something like the SweetMeet. I have a feeling that if the allocated time hadn’t run out Dr Cranston and I could have chatted about stuff like this for hours.

A patient’s experience: educate yourself

Lee Calladine, spoke about his life with Type 1 diabetes which he was diagnosed with aged 33. As DRWF’s Event Organiser Lee organises events such as the DRWF Wellness Day South which I attended two weeks ago as well as last year.
Lee’s message fitted in nicely with Partha’s: educate yourself, find out about your diabetes and your gains will be great. Since educating himself Lee feels more in control, has got his HbA1c lower and minimised his risk of complications and that’s something we all want.

Thanks Sue

The second SweetMeet was a huge success in my opinion and Sue, one of QA’s dieticians, should be thanked by all who attended for organising a great event. Well done Sue, we really enjoyed it.

And finally, Amy wins another prize

At last year’s event Amy won a bottle of champagne in the carb counting quiz, which of course was commandeered by myself and consumed shortly thereafter. With high hopes she entered this year’s quiz and alongside a few others won another prize, this time a set of Rosemary Conley Nutritional Scales which will hopefully be very useful for carb counting.
Here she is with them:
amyprize2

CGM: we’re live with Animas/Dexcom

pink-vibe-sniggerOn Wednesday last week, Amy fitted her own Dexcom CGM for the first time, going live with something she’d (and we’d) been looking forward too for almost a year, 363 days in fact since she got her pump on 20th June 2013.

It was back in March that Animas announced that they had got the licence to sell Dexcom kit for use by kids aged 2-18 but communications dried up and on an off-chance call to them back in May I managed to purchase the kit required: 4 sensors and 1 transmitter at a cost of £500. Typically since we’d been waiting the price had gone up £50. We could have purchased CGM through another reseller for more money and got it a year ago but I wanted the support from two important people, our clinic and Animas. Ultimately I feel this was worth waiting for but I wonder how much support we’ll actually need.

Trying to be prepared I researched what else we might need for the CGM and purchased some funky pink Camo Rock Tape (thanks Rachel), some SkinTac (thanks Carolyn/Shaun) and importantly TacAway too. Another parent suggested that we start without using these things as we needed to make sure Amy wasn’t allergic or sensitive to the Dexcom adhesive.

Amy with new sensorFitting day arrived and all four of us went to meet our rep Emma at the hospital, along with 2 DSNs and a student nurse. As well as being the first people at clinic to have an Animas Vibe it turns out we’re the first to get Dexcom too, so our DSNs were keen to find out all about it. It’s great to have their support.

Emma explained about the kit, showing demo pumps and we went through our expectations of CGM, with Amy saying all the things Emma and the DSNs wanted to hear (spot patterns, basal checking, alerting). Normally Emma would show people some videos about sensor insertion but Amy and I had already watched the great sensor insertion videos by Diabetic Danicaarm insertion video here – so we skipped that part.

With a demo/fake sensor inserter Emma went through the routine slowly for all to see. Within minutes Amy was doing it although as it was the first time she asked Jane to do the initial plunger part. With the transmitter clipped in to the sensor Amy set up her pump to recognise the transmitter and all the other CGM settings (alerts, sounds, ranges).

Amy said the the sensor insertion was easy and painless, although she could feel something it wasn’t painful.

Then it was a case of waiting for two hours until it was time to do the two start up calibration blood checks, something you only do each time you change the sensor. Whilst waiting the Vibe gives you a count down meter which Amy kept checking during the next two hours, keen to calibrate and see her BGs on the screen. The two hour mark came just as we were waiting for the Park&Ride bus to turn up; Amy got out her meter, “no Amy let’s wait til we’re back in the car”. But Amy didn’t wait, she did the tests on the bus and smiled at seeing her glucose level on the screen.

One of the reasons for getting CGM was to make sure Amy’s basal profile was correct whilst asleep, how about this for starters (although I doubt it will stay this good):
A sleeping teenager's basal profile

The wait is (almost) over – CGM, Animas, Dexcom and Kids

pink-vibe-snigger
Earlier this week I blogged about waiting for Animas to get their licence to sell Dexcom G4 for use by kids and how the Diabetes Online Document (#DOC) rumour mill was suggesting an announcement would happen soon.

That announcement was rumoured to be tomorrow at a symposium held by Animas at the Diabetes UK Professional conference in Liverpool.

But it happened today. On Animas’s stall in the exhibition area sat an Animas toy kangaroo wearing a badge which said:

Animas Vibe & CGM system
NOW APPROVED
for children aged 2
years & older

One of my Twitter friends let me know the exciting and now official news:

Making the call to Animas

At lunch time I contacted Animas (0800 055 6606) to try and register for, or buy if possible, the newly approved CGM.
“Hello, I’d like to buy CGM for my daughter who uses an Animas Vibe, now that you’re officially licensed to sell them.” The lady on the other end of the phone was surprised I knew about it but was happy to talk with me.
I was informed the launch date is sometime in April, not April 1st, or the end of April, just at sometime.
I gave my details to be kept on file for them to inform me when they had any news.

And the price?

Animas has had a starter kit deal for some time, certainly from June last year. For £450 that deal gets you a transmitter and a box of 4 sensors.
So I asked if that deal would be still on come April; the conversation went something like this:
Me: “And will the £450 starter deal still be on?”
Animas: “I’m not sure, currently that deal ends on March 31st”.
Me: “Oh great. Well, I’m happy to pay now and just wait until you can send the bits to me.”
Animas: “I’m sorry, we’re not in a position to do that.”
Me: “Oh great.”

Patiently Waiting – CGM, Animas, Dexcom and Kids

pink-vibe-snigger
In May 2013 we chose Animas for Amy’s pump for many reasons, one of which was that in the future we might like to get CGM (Continuous Glucose Monitoring) and Animas’s in-built CGM display unit would make using CGM cheaper – because we wouldn’t need to purchase Dexcom’s own display unit.

Continuous Glucose Monitoring? What’s that then?

A CGM system consists of a sensor which is worn on the body and has a small wire just under the skin which constantly senses the glucose in the interstitial fluid. This sensor connects to a transmitter which sends data to the receiver – in our case this will be the Animas Vibe insulin pump – which can show the user what their glucose level is like. It’s important to know that as it checks interstitial fluid and not blood that the glucose level can be up to 15 minutes behind the actual glucose level.
The Animas Vibe links up with Dexcom’s G4 system.

CGM, an expensive option

There’s no doubt about it CGM is expensive.
One sensor costs between £45 (Animas) and £62.50 (third party resellers).
Doesn’t sound too bad does it, but then again it’s only guaranteed to last one week. ONE WEEK!
If you used it full time, one sensor per week, plus needing two transmitters per year you’d be looking at paying over £3000 and that’s using the cheapest pricing available.
Luckily some manage to get their sensors to last a fair bit longer than that, bringing the cost down dramatically, but then again that’s going against the advice of Dexcom so I’m not suggesting anyone does it. You don’t have to use CGM full time, you can use it for as long as a sensor lasts, then take a break before put a new one on.

Does anyone really need CGM?

It’s a good question. Many health care professionals would say no, for many reasons. They’re definitely worried about the psychological effects of yet another thing to do for diabetes and I can understand this.
Twenty, possibly even 10 or 5, years ago people weren’t using CGM so why do we need it now?
I guess the truth is that we don’t need it now: by understanding how your body reacts to glucose, insulin, stresses and exercise (etc.) some people can really do well to avoid highs and lows, but doing this takes a lot of effort.
Some people will have a clinical need to use CGM; Amy isn’t one of them.
On the other hand CGM will tell you what’s going on with your glucose level throughout the day, alarming you when you go out of range. It tells you if you’re going up or down or not and it shows what’s been happening over the last so many hours. It effectively performs Basal Tests each and every night something which is done by many pump users or their parents.

Dexcom G4

If you’re in the UK you can purchase sensors, transmitters and the stand alone display unit for Dexcom G4 from third party resellers.
You can do this if you want to use it as an adult.
You can do this if you want to use it for your child, if they’re 2 years old or more.
You don’t even need to get a letter from your hospital to say you or your child has Type 1 Diabetes.

Animas and their Dexcom G4 licence…for adults

Animas are licensed to sell Dexcom sensors and transmitters to adults in the UK. You don’t even have to be an Animas pump user to be able to buy sensors from them.
So if you’re an adult with an Animas Vibe you can purchase Dexcom sensors/transmitters and have CGM displayed on your pump.

Animas and their Dexcom G4 licence…for kids (2-18 years)

We were told in April 2013 that by the time Amy got her pump one month later Animas would have their licence to sell Dexcom G4 sensors/transmitters for use by kids.
It’s never arrived.
We’ve been patiently waiting.
We’ve been getting frustrated at the waiting game.

Where’s the logic?

In the UK anyone can buy Dexcom G4 sensors/transmitters, whether it be from Animas or a third party reseller.
In the UK an adult can buy their Dexcom G4 sensors/transmitters direct from Animas.
In the UK a parent can buy Dexcom G4 sensors/transmitters for their child from a third party reseller.
In the UK a parent CANNOT buy these same things from Animas for their child.
Where’s the logic?
As a computer programmer this drives me mad.
Clearly there’s more to it that I don’t know about.

Finding an alternative method

I’ve been very keen to buy through Animas as their prices are so much lower and effectively it means you can get 11 sensors for the price of 8 bought from a third party reseller. As one sensor can last three or four weeks this means that you’d get at least two if not three months more of sensing by buying from Animas.
We’d been told that our hospital would not fund the CGM (fair enough, it’s expensive and there’s no clinical need) but they would help us talk with Animas. I don’t want to go into detail about this but it’s not happened, I’ve felt very unsupported in our quest and frankly it’s really annoyed me. Nine months after originally asking for support I’ve heard they’ve sent us a letter for us to send to Animas to hopefully prove their support for Amy’s case.
However maybe it’s all too late.

Is that a licence I can see in the distance?

The diabetes online community rumour mill has been working overtime recently.
There’s been talk of Animas holding a meeting/presentation/symposium at the Diabetes UK Professional Conference in Liverpool this week.
There’s been rumours that Animas may well be announcing that they’ve got their licence to sell Dexcom G4 products for kids (aged 2-18).
Recently a post on a Facebook group asked if anyone had heard anything.
They hadn’t.
It started a lot of posting activity, with people emailing or calling their Animas rep, or their Diabetes Specialist Nurse.
Whilst no Animas rep would confirm or deny anything one nurse may well have let the cat of the bag.
It seems quite likely that this week the announcement will be made that April will be the launch date.
But we’ve been here before with rumours of licences and dates so I’ll take this ‘news’ with a pinch of salt.

Of course I really hope this rumour is true.