Diabetes has improved our life. What? Really?

A couple of weeks ago I attended a training course with Diabetes UK in London, as I’m soon to become one of their Peer Support team. I’m not going to write about the training itself as for confidentiality reasons that’s between those of us on the course but there’s one part of it we did which made me (and a few others) think about life since diagnosis.

Your journey since diagnosis

Just before lunchtime arrived we were asked to search our soul to find out how we really feel about our lives with diabetes and whether it would raise any further questions, or highlight anything we needed to explore further. This seemed to be a good thing to do as unless we know and understand our own journey how can we help any of the newly diagnosed cope with the early days of their journey.

Urrgghh! Drawing!

Drawing lines on a piece of paper doesn’t come naturally to me but I felt comfortable with our diabetes journey and drew my picture of troughs (and troughs) and peaks (and peaks and peaks).
I started on the left of the page in the middle but soon wish I hadn’t as I ran out of room.
I’d finished way before everyone else and my mind wandered back to a Technical Drawing lesson at school when I proudly approached the teacher asking what to do next, the teacher took one look at my drawing and suggested that I’d finished before everyone else as I’d neglected to do it properly.
I checked my chart. No, we’re good, I’m happy with that.

Diabetes improves our life. What? Really?

Here’s my chart – which may not be drawn to scale whatsoever.

Hover over the yellow buttons to see what happened at that point in time.

29th Dec 2010

diabetes journey chart

At diagnosis, our mood dropped, trying to come to grips with coping with type 1. Thoughts of cancelling the trip to India also got us down.

Lunchtime chat: could this journey really be accurate?

Another peer supporter, Nick Guerin (who won this year’s Quality in Care Diabetes Peoples’ Award) and I were chatting at lunchtime and talked about our own charts, which amazingly weren’t dissimilar, strange considering our journeys have been quite different. Nick’s blogged about it in his own blog Type Aware.
We both quizzed our own charts’ finishing positions: could it really be right that we both thought we’re in a better place now than before diagnosis. It seems crazy but actually I do believe it’s right.
I believe having diabetes has made Amy more determined to do well, to beat her peers in activities, to be thankful for what she has and can do. I feel I’m doing more things for others than I ever did before diagnosis too.
Having said this I’d be much happier right now if diabetes would bugger off.

Go on, have a go yourself

Why not draw your own journey since diagnosis and see how you get on. You may be surprised how you actually view your journey and it may raise some questions for you to explore.
Everyone’s different and there’s no right answer, this is just for fun.

How social media helps us with Type 1 Diabetes

Helping the newly diagnosed

In one of the very first pages I did for this blog I wrote this about the UK Diabetes Online Community on Twitter (#GBDOC):

“The info you can find is so useful that I think that the first advice from any DSN (diabetes specialist nurse) to any newly diagnosed UK patient – or their parent(s) if it’s a child – should be ‘get yourself on Twitter and search for #gbdoc’. Perhaps they should even take it further and refuse to let you leave hospital until you’ve set up your Twitter account and started to follow a few on the #gbdoc people… okay, maybe not.”

How? What? Where? Why?

I’ve created a leaflet which explains how social media has been useful to us; when we’ve used it and the responses we got back; the types of social media channels available; how to start.

NOTE: You can easily get to this page using the URL: http://bit.ly/circlesofblueleaflet

Click the leaflet on the right to download it, have a read and let me know what you think. If you’re going to print it, print it double sided and fold the leaflet as shown at the bottom of page 1.

If you think it’ll be useful to anyone please send them a link to this page, or share it on their Facebook page using the button below.

Health Care Professionals and Diabetes charities

I understand you might not wish to put this out as official material but if you’d like to do something similar I’m happy to help. Hopefully though you can point people in this page’s direction, using this link: http://bit.ly/circlesofblueleaflet.
Want to hear the view of a Doctor about the potential of Social Media use? Read this by Dr Partha Kar: Social media in diabetes: bane or boon?.

Getting an insulin pump – setting up, log books and BG monitoring

Setting the pump up

Going on a pump isn’t just a simple case of plug in and go, it involves a fair bit of work, but nothing insurmountable or problematic, just stuff which needs to be done.
Initially your DSN (diabetes specialist nurse) works out what they believe the best basal profile is for you, doing this by asking lots of questions about lifestyle & food and checking backing weeks of log book entries – that is if you’ve been good and filled in your log book, we hadn’t! So there’s my first tip: make sure you fill in your log book for a few weeks beforehand if you’re not doing it religiously already.
After deciding the profile our DSN read out the values to Amy – during our pump training day last Thursday – she input the values, which brings me nicely on to…

Does your DSN actually need to touch your pump? Ever?

I’d not really thought about this before but at the DRWF event on Saturday Lesley from INPUTDiabetes said something like “Once you’ve got your pump your DSN should never need to touch it, if they do you’ve not received enough training.”
It was a good point and on reflection neither our DSN nor our Animas pump rep has touched Amy’s pump, certainly not to input or change anything, and I’m pretty sure they’ve not touched it at all.
So that’s good then, we’ve been trained correctly.
I suppose it’s oh so easy to hand over your pump to the DSN and get them to change the settings but what do you do when you need to change anything in the future? Would you know how to do it?
In our case Amy is a whizz with things like this so she set up the pump, with me trying to look over her shoulder to make sure they settings were right.
So, for us, not only has the pump not really been touched by the DSN, nor the rep, nor the Doctor, it hasn’t really been touched much by us, the parents.

Filling in the Animas log book

As you’ve probably read I’ve been worried how much my hospital are ok with using Animas as we’re the first in paediatrics in the hospital to have an Animas pump. So it was nice to hear from the DSN who was inspecting the new log book that it was one of the best ones and she’d like us to use it, rather than continue with the Roche one we’d (rarely) been using up to now.
Each day takes up two facing sides, with the top page having columns for each hourly block and rows for readings/values: blood glucose; carb grams; BG bolus (correction doses); Carb Bolus; basal rate; basal rate change; temp basal rate; ketones; set change (tickable).
On the bottom page there’s spaces to write information about food and a big notes area to write notes and things like ‘had a very lazy day’.


A tiring first 48 hours

Our DSN had requested that we test Amy’s blood glucose everything two hours, put the entry into the pump and trust the pump’s suggestion. It seemed a strange request, of course we’d do that, but I guess that some people battle against it and then wonder why their levels are all over the place. I was grateful that it was only 48 hours as a twitter friend of mine, who’s son went on a pump a week ago, has been asked to do it for one week!
These tests were to happen every two hours for 48 hours, including throughout the night so Jane and I divided the shifts with me doing the 10pm, midnight and 6am shifts and Jane taking on the 2am and 4am. This minimised the tiredness levels for both of us, although not by much.
It didn’t seem too tiring initially although I got through most of Friday and Saturday relying on caffeine and much yawning. Luckily Amy managed to almost sleep through all 2am and 4am checks.
From midday Saturday, approximately 48 hours after going on the pump, Amy was taking part in a large choral concert so was without us for many hours. She coped well, still ecstatic about her pump.

Basal/pump reviews and calls from our DSN

Our DSN works Monday to Friday but called us on Saturday in her own time to check how things were going; they were going well.
She called again later that day and again on Sunday.
So far between us we’ve decided that no changes are required to the basal and that we should continue with the current settings.
We’ve got our advanced pump training tomorrow so there may be some changes made then.

Getting an insulin pump – the day has dawned

Woohoo, we’re live and pumping

What a long day it’s been, but a great one and one which has left us all still smiling.

Welcome to our world…

Dr Sheldon Cooper (Amy’s new pump name), or Sheldon for short, or Shelly when he’s feeling a little sorry for himself. If you don’t know who he is then do a quick Google, he’s a character from the Big Bang Theory, one of Amy’s favourite shows. If you know who he is then all I can say is Bazinga.

What’s in a name?

Dr Sheldon Cooper says he’s one of the smartest people alive…and he probably is. He’s much smarter than those around him.
He makes many calculations each day and in his own words he’s never wrong.
His soul mate is Amy (Dr Amy Farrah Fowler).
On many levels this pump was always going to be called Sheldon.

Our day starts

Amy awoke excited at what the day would bring.
I opened a conversation: ‘so what are you going to wear today Amy?’
She didn’t know which top to wear.
I suggested ‘what about this?’ as I pulled her new pink DiabeTees iPump t-shirt out of my wardrobe.
I’d been keeping it there for the past couple of weeks, trying not to accidentally tell her I’d bought it.
She put the t-shirt on.
Delighted would be an understatement.

Where’s my pump?

In the room today was Emma our Animas pump rep, our Consultant Endocrinologist, the DSN (DSN1) who would be supporting the pump transistion, another DSN (DSN2) who’s never used an Animas Vibe and the three of us (Amy, Jane and myself). The room was pretty full.
Emma handed over the massive box to Amy who within seconds had got the pump out, battery in and raring to go.
Such a large box of stuff, but importantly containing 20 sought-after pink cannulas, to match her pink insulin pump and pink t-shirt.

On with the training

Each of us was given a pump and we all went through the menus, primarily for the Dr and two DSNs who had not used this pump before. We are the first people in paediatrics at Winchester to get an Animas Vibe, I think though we maybe be the first of many.
Amy and I already felt quite comfortable with this because of all the training we’d already had with Annie and later with Emma.

Filling up the insulin reservoir

Amy hates needles so I had no doubt that I (or Jane) would be filling the reservoirs for the first few months.
Before we left this morning I asked Amy whether she was going to go into the session nervously or with confidence. We hadn’t discussed it much but clearly she’d chosen ‘confidence’ as she took the filling kit and insulin vial.
Slowly she filled the reservoir with insulin, cleared any air bubbles, primed the pump and filled the tube.

Fitting the Inset II infusion set

Emma talked us through using the infusion set installation, something the three of us were comfortable with as we’ve all worn one for three days previously. I was surprised that the HCPs showed no real interest as I guessed they’d not used them before.
Amy installed her set with confidence, it had gone in perfectly, but disaster struck as she immediately felt faint. Under advisement from the Doctor she put her head between her knees and within 5 minutes was feeling much better again.
Here’s Amy in showing off her pink Inset II infusion set.
Amy shows off her pink ensemble

Setting up Amy’s pump

The conversation turned to the Doctor and two DSNs as Emma asked them what settings to apply on the pump for basal, and maximum bolus settings and the like. Once they decided, Amy set the pump up under direction from Emma and a close eye from me. I feel confident in setting up basals in the future, although don’t plan to do any changes by ourselves for some time yet.
Amy clipped in her infusion set to her cannula, primed the cannula with 0.3 units of Novorapid and that was it: she was live on an insulin pump.
And relax.

Lunchtime calls, bolusing beckons

It was time for a well earned break, it was lunchtime. We decided to go the cafeteria, get some food and bring it back to the training room.
30 minutes later, back in the room and Amy did a blood glucose test, chose ezCarb from the menu, entered her BG reading (4 mmol), entered the carbs (50g), clicked ‘Show Result’ and instructed the pump to give the bolus insulin (3u).
Success, a first bolus.

Almost done

After a bit more chat about temporary basal rates, sick days and school it was almost time to go, but not before we opened one of the two boxes of chocolates we’d bought for Emma and the HCPs, to say thank you.
The box said it was 23g for three chocolates, Amy had done a test, entered the carb amount and given herself a bolus within seconds.
This is one of the reasons she/we wanted the pump and as for the last 2.5 years Amy refused to have any snack over 10g/15g as she did not want to increase her daily number of injections.

Word for the day?


Pink pump, pink cannula

Getting an insulin pump – a date with a pump

Rung six (or is it seven) – a date with a pump

Today, sat at work, just recovering from my 12 mile cycle to work I got a call from a number I didn’t recognise. I didn’t answer it immediately but then saw it was a Winchester number, who could it be, I’d better answer it.
It was a DSN whom I’ve never met whose recently joined the diabetes team and it was the first time I’d spoken to her, but what a first conversation to have, which lasted for the next 24 minutes.

Damn you email Spam filter

The DSN had sent me an email yesterday and was surprised not to have had a response, the team at Winchester had obviously told her how internet-addicted I am and how keen we are for the pump – I may have emailed them one or two too many times recently asking progress 🙂
I hadn’t seen the email, it had been caught up by my email spam filter which had decided to ditch everything I did want and nothing I didn’t.

Is the 20th July any good?

I wasn’t near a computer to read the email so the DSN went over the details: would dates for the 20th and 26th July be okay?
“Yes, of course, fantastic, wow, this is great”. “But I just want to check when Amy is going on the school trip in July first”.
We spoke around different issues for a while, discussing how very confident we feel about going on the pump – yes, yes, we know it’s not a cure, yes, yes, we know that Amy might not enjoy the experience – and we spoke about initial use of saline or insulin.
The DSN said she’d like to meet us before the first date, “how about a week and a half before the pump, perhaps on the 10th”.
“Yeah, sure, 10th, that’ll be fine. That’s a Wednesday right?”
“No, the 10th is a Monday”.

Hold on, you mean June?

“10th July, that’s definitely a Wednesday.”
“Sorry Kevin, I’m talking about June, not July.”
“For the chat? Then the pump in July.”
“Erm, no, for everything.”

Saline or Insulin?

Many people seem to use Saline for a week or two, just to get used to wearing the pump: we discussed the issues over what would be best.
Initially we both thought Saline would be best but…Amy’s off on a school trip to Europe mid July. So we decided going on insulin immediately was the best idea, to give us 3 weeks to iron out any issues.

A date with a pump

So there we have it, Amy will be getting her pump on 20th June, going on insulin straight away.
I’m so excited.
One week later we’ll go back to clinic to check everything’s okay and learn all the advanced techniques.
I think we’ll find it hard not to use combo-bolusing immediately!
Two weeks later Amy goes on a school trip to Germany.
Actually, I’m now blooming nervous. I wasn’t before but I am now.


Did I mention that Amy will be getting her pump on the 20th June? 🙂

Getting an insulin pump – official pump demo – Animas Vibe

Rung five – official pump demo – Animas Vibe

Yesterday we had a 4pm meeting with our local Animas representative Emma at our the hospital. It was Emma’s first meeting with the Paediatrics Diabetes Team at Winchester and that meeting had happened earlier yesterday, which is why I tagged ours on afterwards. Jane and Amy were travelling up separately from another direction.
Jane and I had already had a great demo of an Animas Vibe from Annie a couple of weeks back, but this would be Amy’s first demo, although she’d played with a similar pump earlier.
The RHCH hospital in Winchester only has a couple of adults using an Animas pump, if we go for it Amy will be the first child with one.

Like a blind date

It was funny though, like a blind date where literally I had no idea what Emma looked like. We’d arranged to meet in Costa at the hospital, but it’s large enough Costa to get lost in. I was first in – Jane/Amy were coming separately – followed in by two ladies. I got a coffee, they sat down, and I scanned them – hey, no, not like that! – looking for Animas logos/words/bags but nothing. So that wasn’t Emma with a colleague then, that’s fine, must keep a look out though. Jane/Amy arrived, ordered drinks, well at least Jane did, Costa don’t seem to do anything for a person with diabetes who doesn’t want to take any insulin at that moment. No-one else came in who looked like a rep, no-one else carrying anything. I thought about texting Emma but didn’t but looked over again at the ladies and noticed a tube on the table, scanning around I saw an Inset II infusion set. I went over and introduced myself. We’d been in the same place together for 20 minutes.
The other lady was from another part of Johnston and Johnston, who’s switching to the Animas side soon.

How to start a demo properly

I’d already prepared Emma by telling her not to talk about or demo filling the cartridge; to make sure needle sighting was kept to bare minimum; to make sure she brought pink infusion sets; to make sure she brought a pink Animas Vibe pump.
Emma looked Amy straight in the eye and said (something like) “Amy, how are you and what are you feeling about pumps at the moment?”, followed by “What are you looking forward to about getting a pump?” followed by “What are you even slightly worried about with the pump?”
For probably ten, fifteen or maybe twenty minutes Jane and I took a back seat and listened to their conversation. This was brilliant; exactly what we wanted; exactly what Amy needed; exactly what should have been done, well done Emma.

A pump of many colours

Emma got out five pumps, one brand new which she Amy to look at, hold and feel. The other four were the demo pumps and came in black, silver, blue and pink. Any guesses for which one Amy picked up immediately? It was pink. The only colour missing was green, but that didn’t matter as we’d seen Annie’s daughter’s green one a couple of weeks back. The green would be Amy’s second choice as it’s a nice looking colour.

On to the demo

Emma asked Amy what she does for a bolus at the moment and Amy spoke about her routine. We then ran through how that would be done on the pump. For once I was quicker on the buttons and menus than Amy, but that won’t last, she’ll soon be operating it and blurred-lightning-warp speed, so fast I won’t be able to keep up, so I’m chalking this up as a win for me 🙂
First bolus done, then another, then another.


Emma demoed the different bolus types and spoke for a while about combo (or ‘split’) bolusing. The idea is that some foods take longer for the ‘sugar’ spike to happen, pizza for example and pasta meals, whereas others spike and drop very quickly, such as things high in sugar and low in fat.
This is not something you can easily do when on multiple daily injections (MDI), you literally give the insulin and it does it job in whatever time frame it works in. You give all the insulin in one go, normally before the meal or after, and the only way you can split bolus is to take two different injections. Name me a 12 year old who will be happy to do that!
It’s so easy to split bolus on a pump and makes so much sense, although I can’t make up my mind whether I’m just sold on this idea and it’s useless or whether it’s a damn handy feature. It seems to make so much sense.
I’m sure all pumps are similar but on the Vibe split-bolusing – or combo bolusing as they call it – is so easy: select the option; say how much (e.g 30%) you want now and how much (e.g. 70%) you want later; set the duration for the bolus (e.g. 4 hours); it’s done. The 30% (or whatever) will be delivered now, the 70% (etc.) will be delivered over the next 4 (etc.) hours.
So presumably the next ‘Carbs & Cals’ book will by ‘Carbs & Cals & Protein & Fat & SplitBolus’?

Basals and Temporary Basals

On MDI Amy gives herself about 13 units of Levemir at a set time each day and this lasts around 20-24 hours. Many people say less, others don’t, it’s a debatable area. One thing’s for sure though and that this Levemir is known as ‘basal’ insulin and has a long acting time, designed to get her through the day and mimic what a healthy pancreas does.
On a pump the big advantage is that no longer is a basal injection required as the pump dispenses a very small amount of fast-acting insulin (Novarapid, Apidra) every 2 or 3 minutes.
This advantage becomes even bigger when Amy is doing some sport as exercise will more than likely drop her blood glucose levels. With the pump you can set a Temporary Basal Rate (TBR) to overcome this, reducing the default basal rate by any percentage (in increments of 10). Setting a 30% TBR means she’ll only be getting 70%(ish) of her normal basal insulin for whatever period she chooses. When setting the TBR you not only decide the amount but also the length of time it’s active for, after which it reverts to normal.

Infusion set change

Jane and I had already done a set change with Annie a couple of weeks back, with Annie placing it on her arm for the first time. I didn’t step forward to be the subject last time but this time I’d decided I’d step up and be the test dummy. Amy didn’t want to do it on herself or on me, so Emma got out a couple of sponge-like pads.
Emma gave Amy an Inset II infusion set and took one for herself. Slowly she talked Amy through the process and explained some of the design benefits of the set. Amy was cautious but managed the change very quickly, although didn’t do one part correctly and the set didn’t stick the the pad. I could tell Amy was concerned this would happy all the time in real life but was assured it is normally ok. She did it again and it worked fine.

End of a great demo

A lot of questions from us and Amy later and the demo ended.
Emma had demonstrated the products very well, she’d answered every question we had, she’d reassured Amy of any worries, she’d confirmed all the good things Amy already knew. Thanks Emma.
Amy left there with a smile.

Getting an insulin pump – pump demo – Roche Accu-chek Combo

Rung five – first official pump demo – Roche Accu-chek Combo

After our carbohydrate counting training refresher yesterday morning we stayed at the hospital for lunch as we were due to have a demo. It was all a bit of a rush as we only had 40 minutes to each lunch and switch locations, something not helped by spending 10 minutes trying to decide which sandwich to buy: Amy hates sandwich fillings, there’s nothing she likes that a sandwich retailer would sell. Luckily after 10 minutes I spotted the jacket potatoes.
All fed and watered we went to our demo.

The waiting room

The pump demo was also being given to a husband & wife whose little 5 year old is also due to go on a pump after having diabetes for one year – they’d been sat next to us on the carb course.
Our DSN arrived with pump demonstrator Helen who was pulling a huge crate of pump supplies and accessories.
I understood that this was due to be an informal chat about the pump with one of Winchester’s nurses, so I was very pleased to find out Helen is one of Roche’s pump specialist nurses. This was good news, we were likely to find out far more information than I originally thought.

First look

Helen gave both families a demo box containing the pump and meter. The sturdy looking box had been prettified, kiddified, to aid presentation but Amy opened it up faster than she unwraps Christmas presents and started playing with the pump straight away.
Amy stole ours, I didn’t get a look in.
Helen demoed the functions to us, a job made easier as both families were already using Roche’s Accu-check Aviva Expert meter, which turns out to be virtually the same meter as used with the Combo pump.
Roche had clearly been quite clever with releasing the meter for non-pump users as it makes the transition from their meter to their pump so much easier for everyone: the nurses; the parents; the kids. Helen told us that the meter was originally released for the pump and later amended to work for people on injections.

The meter – we love this meter

Amy had been using the Accu-chek Aviva Expert meter now for some time and it’s been great for her/us because of its bolus advisor.
To explain the testing/calculating/eating scenario which people with diabetes go through every day:

  • 1. test their blood glucose
  • 2. calculate the carbohydrates in the food
  • 3. calculate how many units of insulin they need for the meal, often using pen and paper (as we need to divide by 13 or 12 depending on the time of day)
  • 4. adjust the insulin amount depending on whether they’re high or low, and figuring out whether they already have insulin in their body which is still ‘active’ or ‘on-board’ as we all say.
  • 5. inject insulin. which can be broken down as follows:
    •     5.1. find the correct insulin pen containing the fast-acting insulin
    •     5.2. place needle on the pen
    •     5.3. do an ‘air-shot’ removing any air in the new needle, we use/waste 2 units of insulin for this.
    •     5.4. Amy needs a quiet uncrowded place, which takes time to organise
    •     5.5. remove clothing if required
    •     5.6. inject insulin, counting to ten whilst the needle is in.
  • 6. finally they can eat.

Diabetes is exhausting, you can see why.
Using this meter the process is simplified:

  • 1. test blood glucose
  • 2. calculate carbs and enter it on the meter. The meter tells you exactly how much insulin you need to take, using your ratio for the time of day and taking into account any active insulin
  • 3. inject insulin, using steps 5.1 through 5.6 above.
  • 4. eat.

If you’re on MDI (multiple daily injections) then I suggest you take a look at this meter, it really does make life easier, so much so that I can’t understand why anyone on MDI wouldn’t use it.
The only key difference between the Combo meter and the Expert is the addition of a ‘pump’ settings menu, where you can set the various bits to do with the pump.
Helen demoed the meter, a few seconds behind Amy who’d already sussed it out, without any explanation.
Amy hadn’t really listened to Helen but I could see that Amy had already given a bolus for the virtual 225g she’d eaten and the pump whirred away quietly giving it’s virtual insulin, or air as we like to call it.
So within minutes Amy had already become proficient enough to use the pump. There’s obviously more technical stuff to learn but the simple stuff is just that: simple.

The pump

The pump itself is quite small measuring roughly 8cm x 6cm by 2cm and weighs in at only 110g when full of insulin.
Like the Ford Model T car you can get it in many colours such as black, black or black. They do give you lots of stickers to customise it with though.
So, from the outset it’s not quite as pretty as the Animas Vibe which comes in multiple colours but doesn’t that matter? Should you ever choose a medical device based on its colour? (I’ll avoid the obvious jokes and women and cars at this point.)
The pump is waterproofed as much as any other pump but for some strange reason Roche suggest you don’t get it wet, just in case the casing has cracked after leaving the factory. This is certainly not a plus point for this point; they might as well tell us it’s not waterproof.
The pump runs on an AA battery which they supply, but more importantly they’re available everywhere. If you run out at any vital point the chances are you can at least borrow a battery from a remote control or camera or something.
The pump should last up to 25 days on a single battery.

The infusion sets

Helen demoed the three types of infusion set – the part that sits on and in the body with its little canula.

Rapid-D Link: The first set is very small as has a metal cannula either 6mm, 8mm, 10mm or 12mm long. The great thing about this set is that you just hold it as you would for an injection and push it in the skin. Helen demoed it on our DSN – lucky her! – who I’m glad to say didn’t move, cry or scream. The only downside I could see was that it has a trailing bit of tube, a few inches long, which will always be there, even if you disconnect the pump to go swimming etc..

Flexlink: The second infusion set was the called the Flexlink. It was the one Amy had seen before; the one which made her realise her fears of something metal inside her didn’t need to stop her from getting a pump. The Flexlink features a soft teflon cannula which can be disconnected at the infusion set, without any trailing tubes once disconnected. It’s great that it’s got a teflon cannula, it solves Amy’s issue, but there is a downside: being flexible means it needs to be inserted with a special inserter. This didn’t bother us as the process seemed very quick as Helen inserted the set on/in her, but the other family quite rightly said ‘oh great, another bit of equipment to carry around’.

Tenderlink: The third infusion set was called the Tenderlink and gives the benefit of being able to insert it at an angle, especially useful for fit/lean people who have less body fat. It’s inserted by hand at any angle between 20 and 45 degrees. Once in the needle within the cannula is easily removed and the pump tubing clipped on. Honestly though that needle looked huge and I can’t imagine Amy doing this herself. I’d previously told Helen about Amy and fears of metal cannulas and this one is the one when Helen told Amy not to look, I can see why.
Easy choice: It was a simple choice, Flexlink it would be if we go for a Roche pump. Insertion is easy with the tool which makes it nigh on impossible to get wrong; the soft teflon cannula cures Amy’s needle-in-the-body fears. I can imagine Amy being able to do this set change herself without problem.


In my mind there’s only one downside to this pump: it has no ability to work with a CGM (continuous glucose monitor). Helen said it never will and that any other devices from them aren’t likely to reach the market place within the next couple of years.
This isn’t a massive downside as such as it’s always possible to purchase – for example – a Dexcom G4 CGMS but you’d have to fork out £650 for the Dexcom’s display unit, something you would not have to do/spend if you had an Animas Vibe, as it’s built in on that device.
When you take on a pump it’s a 4 year plan, you can’t upgrade (I asked) if a new better pump comes along. Amy’s 12 at the moment and over the course of the next four years will go through some of the most glucose-challenging years possible. She’ll take GCSEs for probably three years on the trot and it would seem a CGM during these times would be incredibly useful.
For those reasons I’m very interested in self-funding CGM, even though it’s incredibly expensive (up to £240 per month). We’d probably only use the CGM when required, to save money, but I’d really like the possibility of doing it, without having to fork out £650 for G4’s monitoring device.

Covert bolusing via Bluetooth

This has got to best the best selling point about the Combo; I can imagine they win over their competitors so much because of this.
The meter is connected to the pump via Bluetooth (ooh Bluetooth says my inner geek).
After the user has done a blood test and entered the meal’s carbs on the meter they press one button and the pump is instructed to deliver the insulin. That’s it!
(In reality there’s lots of bolusing options but for a simple bolus it’s a single button.)
So what that means in reality is that the pump does not need to be accessed. If it’s hidden under clothing, or wedged in a pocket, it doesn’t need to be removed, or touched.
You tell me a 12 year old who doesn’t think this is cool.
CGM or not this pump is the strongest contender at this stage. Medtronic is out IMO so only the Animas Vibe can beat this one.

Getting an insulin pump – carbohydrate counting training refresher

Rung four – carbohydrate counting

This morning Amy and I attended a carbohydrate counting training refresher course at our local hospital in Winchester. We’d already attended a similar session back in September 2011, just after we returned from India, when we switched over from giving a very rough estimate of insulin based on meal size, to a more accurate carb counting method.

Starting off badly

The day did not start at all well: we left the house at 8:30am giving us one hour to cover the 8 miles, easy, no problem. At mile 2 we joined a 5 mile queue which – on checking the traffic maps – had no way out.
We were going to be late.
On reaching the hospital already late we parked in the only single space left in the car park and rushed to the education centre, the one we’d be to before.
They’d moved it…to the other end of the hospital complex, right next to the car park.
We ended up being 30 minutes late.

5 families, 2 kids, 2 dieticians and 1 nurse

There were 5 families there, 3 couples came without the child with diabetes as they were only 4 or 5 years old.
The other family were from the village next to ours and live down the road from us. Amy knew the boy – let’s call him ‘B’ to protect the innocent and all that – from her previous school.
Amy is only one year older than ‘B’ but that year is immense in school years so clearly she’d never spoken to him about diabetes much, if at all. They say there’s strength in numbers, but not if you’re an 11 year old boy and a 12 year old girl.
There were two dieticians there, one to take the session, one to take notes and help out where required.
Our wonderful diabetes specialist nurse ‘V’ was there.
The session objectives were read out and off we went.

5 families, 1 plate and lots of food

On the table in front of us was a massive – 2 metres by 2 metres – canvas with a plate on it. The plate was divided into sections for fruit and vegetables; bread, rice, potatoes and pasta; meat, fish, eggs and beans; high fat and high sugar; milk and dairy food.
It was the NHS Eatwell plate, but without the food.
Then came the plastic food, lots of it, tons of it even.
We each took some food and placed it into the section we thought it should go in.
We all did very well and whilst most were placed correctly, others were not, but only a few.

To carb, or not to carb, that is the question

William Shakespeare’s Hamlet may be been completely different if it was written after the discovery of carbohydrates, but alas the immortal words are the rather less catchy ‘to be, or not to be’.
Next up then was the does-that-have-carbs-or-not quiz using the same food items, pushing those with carbs to the right, those without to the left.
That game is so easy, especially if you change it to the would-I-want-to-eat-it-if-I-was-hungry game.
All hungry people’s brains scream ‘give me carbs’ don’t they? Never I-am-so-hungry-I-could-eat-some-lettuce.
So this quiz was pretty easy for all, bar the odd argument from me – more on that later.

Breakfast time beckons

Next up we were given printed plate photos of breakfast items, ranging from two crumpets with butter, through cereal, to a full English breakfast.
It was okay though as I’d only recently eaten my cereal so the sight of all this food didn’t make me hungry.
In teams we estimated the carbs and went round the room discussing why we’d reached that calculation, before finding out the right value.
What surprised me was how good some of the people were at this. ‘B’ and Amy were by far the best at this game, which surprised me. Amy’s been carb counting for 18 months now but ‘B’ was here to learn but already seemed to know it all.
The same game was played with lunch and dinner and it generally went well.

The Fish Finger Conundrum

One of the biggest discussions was about fish fingers. One family knew the ones they have are 17g of carbs for 3, but course notes said 15g and the book Carbs&Cals says only 9g.
It didn’t seem to matter too much to most but the conversation carried on quite light heartedly throughout the rest of the session, almost like an in-joke between friends.

If it’s got carbs you should count it, shouldn’t you?

During the carb estimates whenever there was just one tablespoon of 5g-carbs veg it wasn’t counted.
It’s 5g of carbs.
The dietician said not to count it, you didn’t need to, it’s only 5g carbs.
“Okay” I said “what if there’s three lots of 5g veggies?”.
We were told we’d need to count the 15g in the total.
“Okay, what if there’s only two lots of 5g veggies?”.
“That’s okay, you don’t need to count it” the dietician said.
My logic brain took over and couldn’t keep quiet. “What? That makes no sense, 10g carbs will raise many kids glucose levels by 3mmol, which in turn needs 1 unit of insulin. Counting the 2 lots of veg at 10g could be the difference between going hyper or not.”
I was told again the we didn’t need to count it.
In my head I agreed to disagree, it wasn’t worth arguing but it still makes no sense to me.
If anyone can explain this to me – without resorting to a ‘just because’ – please leave me a comment; I really don’t understand it.

Getting an insulin pump – climbing each rung and setting up pump demos

Climbing each rung

I’ve viewed the progression to Amy getting a pump as a ladder, one that we appear to be well and truly on. For the record I don’t really like climbing ladders but I’ll make an exception for this one.
The first rung on the ladder is just learning about the basics about pumping, so you can decide on whether you want one.
The second rung is making that decision and requesting a pump.
The third rung is getting back a response from the hospital that you’ve not been totally denied the opportunity. (You never quite get the ‘yeah okay, that’s fine, funding is in place, just pick a pump’ response so anything other than a ‘I’m not sure you’re eligible’ should be seen as a good sign.)
The fourth rung, at our hospital, is to be invited to and attend a carbohydrate counting training session.
Our fifth rung will be to get some demos from either the special pump nurses or by reps from the pump companies.
I’m not sure how many more rungs there’ll be but we’ll worry about that later.

Where to start the research?

I’ve felt a little bewildered on where to start with fact-finding about pumps, even though there’s only 3 key runners available to me.
It should be simple when you consider that it took only an hour or two to decide I wanted the buy the house I’m currently living in and considering the cost of a house against that of a (free to us) insulin pump it’s hard to figure out why we wouldn’t just take the first suggestion from the hospital.
I mean this diabetes malarkey is hard enough to contend with at the best of times so why not just let someone else choose the pump?
But somehow there’s no “oh it’s lovely” or “that’ll do” with the pumps and once chosen we’re tied into it for four years, so we’ve got to make the right choice.
Or do we? Does it really matter? Aren’t they all the same!?
I didn’t know the answers and worse I didn’t know the questions, hence my bewilderment.

Research, research, research

For the past few weeks I’ve been lightly researching the pros and cons of each of the pumps which are available to us, which are by Animas, Medtronic, Roche/Accuchek. The Omnipod is available to us but our clinic will only partially fund it as it’s a lot more expensive, so I’ve discounted that one as partially funding it isn’t an option my bank manager will agree to.
I’m not sure exactly which models are available for us to choose but for now I’m presuming it’ll be the Animas Vibe, the Medtronic Paradigm Veo and it’s definitely the Roche Accu-chek Combo. The Medtronic model may not be the Veo but I’ll do my research on that to start with.
I’ll probably do another post on the information about each pump once I’ve learned more about them all.
A fifth pump, the CellNovo looked like everything this geeky father could wish for his daughter but after contacting them it seems it’s not a likely option for the foreseeable future. Darn it!

The hospital’s view on pumps

The hospital are openly (currently) keener on two pumps, the Roche Accu-Chek Combo and the Medtronic Paradigm Veo.
They don’t hide this, they tell you up front and the reason is very simple: the more they know the pump the more chance there is of offering telephone support from memory and the quicker any problem is resolved.
After a quick discussion though it was clear that whilst this is their preference it is not a restriction and they are more than happy for us to go with another pump, such as the Animas Vibe or Omnipod.
They do have an Omnipod user at the clinic but only one.
If we go for a Vibe we’ll be the first, but this isn’t something that bothers me, we can support the unit ourselves, it’s the basal/bolus rates that we need help with.

#DOC to the rescue for pump advice

Suddenly it dawned on me that there’s loads of pumpers out there already, many of whom I’m either following on Twitter or in many cases I’m following their parents, on Twitter that is, I’m not a stalker!
So to the DOC I turned and started gaining an insight into what questions I need to be asking or researching the answers to.
It seemed clear from the outset that seeing a pump or two would really help matters.

Time for our first real pump demo

I’m excited about tonight as after work Jane, Amy and I are meeting up with a couple of #DOC people who live locally, both of whom I’ve never met.
After one of them – @Ninjabetic1 – recently got a AccuChek Combo pump we chatted and I asked if a demo would be possible, after all only seeing a pump actually started to change Amy’s feelings towards them.
“Of course” she said, unsurprisingly.
After a while we realised that another local #DOC person had a Medtronic Paradigm and was very local. She also was more than happy to give us a demo.
So I’m excited to be seeing a couple of pumps but especially at meeting a couple of people I’ve conversed with over Twitter for quite some time.
The best bit is that we all get to eat cake, well how else can they demo the pump’s bolus feature? (It’s all in the name of science.)

Rung Four: 9:30am tomorrow

Tomorrow Amy and I step up to rung four: we’re off to the hospital for our pre-pump carbohydrate counting training session.
After talking with the diabetes specialist nurse it seems this will be a session very similar to the first with a mixture between people just about to start carb counting for the first time and two families (us included) who are going on a pump soon.

Rung Five: 1pm tomorrow

Things are really moving on quickly and after the training session tomorrow morning the other pre-pump family and us are returning to the clinic for an informal pump demo by the hospital’s Roche pump specialist.
Personally I hope that I know everything they’re going to tell us as it will prove that I’ve done my research right. But even if this is the case it will be nice to get the hospital’s angle on the pump.
I might even get to find out whether the Mexican-wave-bolus is an urban myth or not.

All demos done

We’re ending a very busy diabetes related week with a visit to JDRF’s Discovery Day in Bristol on Saturday. An event where the parents get to listen to talks whilst the kids get to visit the @Bristol science centre in the same building.
We weren’t due to go to Bristol, we’d booked for Dorset, but as soon as I realised a couple of other #DOC people were attending I wanted to go there instead to meet them.
Now, there’s so many #DOC people going that I’m more excited about meeting them than going to the JDRF day; I can’t even remember what the day is about anymore. Oops.
A bonus of this day out is that one of #DOC has an Animas Vibe and has kindly offered to give us a demo.
So within three days we’ll have had demos of every pump that we’re currently thinking about.
Then the real research can begin.

The ‘What to do if your kid doesn’t wake up’ training session

Oh. My. God.
One day you’re told your child has a serious illness and the next you’re being told what to do if they don’t wake up. It’s been a hard 24 hours.

30th December 2010, just after lunch:

Amy was eager to get home as soon as possible, to get things back to normal. We weren’t so sure. In some ways it was no different to when Emilia was born, we wanted to get out of the hospital as soon as possible; we wanted to stay there for our own security.

One of Winchester’s superb DSNs said to Jane and I that she needed to show us how to do something and that perhaps we should do it away from Amy. It was call a good call, whereas my suggestion of the ‘away from Amy’ place being the vacant bed next to her with the curtain around it, probably wasn’t.

Sat on that bed, with the (not-quite-sound-isolating) curtain around us, the DSN explained about severe hypos and how to use the Glucogel.

And then she did it. She got out the Glucagon kit, Jane’s worst nightmare.

The DSN realised that this wasn’t going to be our favourite subject and dealt with us very well, calmly and professionally but we had no chance of playing truant from this lesson. We understood the need to understand.

We each had a kit, with its bright orange case, its needle and its vial. We followed the instructions and all went well. We felt confident and did it again.

I hope I never do it again.