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Getting an insulin pump – official pump demo – Animas Vibe

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Animas Vibe pumpsAnimas Vibe pumps

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.

Combo-bolusing

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

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Roche Accu-chek Combo pump and meterRoche Accu-chek Combo pump and meter

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

Accu-chek Aviva Combo meter, almost identical to the Aviva Expert

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 Accu-chek Spirit Combo 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

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

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

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.

Downsides

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

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The NHS Eatwell plateThe NHS Eatwell plate.
(not for each meal you understand)

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.
Dammit.
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

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picture of a ladderThere’s many rungs on the ladder towards the pump

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.

Getting an insulin pump – requesting a pump

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Medtronic ParadigmA Medtronic Paradigm Veo wearer with pump and CGM

At Amy’s quarterly clinic on the 15th March 2013 she saw her first pump, within 28 hours she was on the waiting list. But let’s go back a stage or two first.

On a high

Amy’s decision that she wanted a pump left us very excited about the future prospects. It was almost like I’d booked flight tickets for a long-awaited holiday, or being told one my ex-pat friends is coming to stay. For us parents we’re thinking about the tighter control which will only help her long-term whilst Amy’s not so aware about the potential complications and thinking more about the short-term.
She’s not said it but knowing her she’s probably excited about having another gadget.

Strike whilst the iron is hot

At the end of the evening it suddenly struck me that there was no point in waiting around, I had the Doctor’s email address so why not contact her to tell her the exciting turn of events. It went like this:

Dear….
Thanks for today’s clinic, it went very well and was good to hear Amy wanting to ask questions…
So our amazing news is that Amy has said that she’d like to see if she’s allowed a pump, she actively wants one.

It then went on to explain how Amy had arrived at her decision: the pump demo; touching the cannula; understanding the pump basal; seeing the same meter she uses and hearing how it controls the pump.

So what do I need to do to start the ball rolling? Are we likely to get denied due to NICE guidelines or is there more leniency towards 12 year olds?

At 11:26pm I clicked Send.

Worried about the NICE guidelines

For those who don’t know NICE (National Institute for Health and Care Excellence) is the UK’s special health authority who produce the standards and guidance for the health trusts/authorities in the UK, such as our beloved NHS (National Health Service).
I’d recently read that NICE guidelines for insulin pumps change when a kid reaches 12; if I’d known this before I’d have started the talking to Amy a little earlier and attempted to get the request in whilst she was 11.
Here’s the two key salient bits of the guidelines, one of which is subjective, the other is objective:

Continuous subcutaneous insulin infusion or ‘insulin pump’ therapy is recommended as a possible treatment for adults and children 12 years and over with type 1 diabetes mellitus if:

– attempts to reach target haemoglobin A1c (HbA1c) levels with multiple daily injections result in the person having ‘disabling hypoglycaemia’, or
– HbA1c levels have remained high (8.5% or above) with multiple daily injections (including using long-acting insulin analogues if appropriate) despite the person and/or their carer carefully trying to manage their diabetes.

Amy’s hypos do ‘disable’ her for a while but I’ve read of many people who are far, far worse.
Amy’s hbA1c result on 15th March had come down by 0.3% to 8.0%; the quarter before it went up by 1% to 8.3%, the highest she’s ever been.
The more I read the more I convinced myself she wouldn’t be eligible, something I had previously warned both Jane and her about.

Sit back, relax and wait for the reply

I was up early the next day taking my Dad and Step-mum to see my brother for the weekend, repaying a little for all those years Dad chauffeured me around. My Dad has Type 2 Diabetes but his management of it is done by my Step-mum, who’s pretty clued up about type 2 and very interested in type 1. The journey takes around 90 minutes and we were talking about Amy/clinic/pumps for probably 89 of those. As grandparents they were elated at the prospect of the pump.
After lunch I checked my emails on my phone and was quite surprised to see an email which arrived at 1pm that day.
It went like this:

Thanks for your email. Amy will be eligible for pump therapy.

Wow, really, that just said ‘will be eligible’ didn’t it?

She would probably benefit from a meeting with the Roche pump rep first to look at the pump in more detail and to be certain that this is what she wants. If she is keen to pursue pump therapy I will then contact the commissioners to let them know for funding purposes…

We’d spoken about Roche purely as its pump meter is the same as Amy is used to. It’s by no means certain that she’ll get a Roche pump. More on that later.

We then organise a refresher session on COH [carbohydrate] counting with one of our dieticians and following this an appointment for pump start with one of our team…

Okay, so the Commissioners are just informed? It doesn’t sound like funding is going to be a problem. Yay!

We could probably look at starting pump therapy for her in June/July time.

Gulp! Really!?
The words ‘June/July’ suddenly made it seem very real.

From the moment we entered the clinic to the moment we received the email was about 28 hours, it had been a whirlwind, in a good way.

Getting an insulin pump – educating Amy

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Accu-chek Combo pumpAccu-chek’s Combo pump and meter

Pumps: are they any good?

Having been a member of the Twitter diabetes online community (#DOC) for several months now I’ve learned one key thing about pumps: they’re pretty good.
Quotes like “the pump gave me my life back” are commonplace and it’s a rare thing to find someone who started pumping and went back to MDI (multiple daily injections of slow-acting and fast-acting insulin).
So it leaves me with the feeling that a pump is a worthwhile thing.

It’s the child’s decision

To get one thing clear up front, I would never wish to impose an insulin pump on Amy.
She’s 12 years old now, she’s very logical, she can weigh up pros and cons, so she can choose when or if she wants to switch to an insulin pump.
But how would she know whether she feels a pump is for her until she knows the facts about pumps, its good points and its bad?

Sowing the seeds

For many months now I’ve been talking to Amy about pumps, from things I’ve learned from the many #DOC tweeps who are pumping their daily insulin. Giving her the odd quote here and there; showing her the odd picture or two; working into life events which would be easier or quicker if using a pump.
A good example of this is Amy’s lunchtime routine at school: currently she has to do a blood glucose test, enter the carbohydrates she’s about to eat, go into a room/cubicle, prepare her injection, remove the necessary clothing, do the injection and finally it’s time to eat. With a pump she can cut out the requirement to move to another room, there’s no need to prepare the injection, no need to remove clothing, nor do an injection.
If she switched to an Accu-chek Combo pump once she’s entered the carbs into the meter she’ll just need to click a couple of buttons and the insulin will be delivered.
More importantly this will give Amy her lunchtimes back and will mean that’s not missing out on the social side of school.

A quote I’ve always remembered, by bad_diabetic

Held back by fear

So Amy had already started to understand that a pump has many benefits and she wasn’t bothered about wearing the pump 24×7 but one thing however always held Amy back, the fear of needles.
To any people reading who (thank God) don’t have type 1 diabetes I’d just like to say that repeatedly having to stab yourself 10 times a day doesn’t remove your fear of needles.
Amy’s specific worry was about the cannula, not the cannula itself but that it would hurt if someone banged into her.

Asking questions at clinic and fainting – 28th December 2012

Two years after being diagnosed we were at Amy’s quarterly clinic and the Doctor turned to us and asked if we had any questions.
I said “Amy, ask the Doctor about that worry you had about pumps”.
She asked about the cannula and the Doctor said there were many types, some metal, others are like plastic. Amy seemed intrigued.
“Shall I go and get a pump” asked the Doctor as she walked out to get one.
Amy fainted.
After resting for a while we left the clinic and never mentioned anything about pumps for a few weeks.

A more successful question time – 15th March 2013

At the end of the next clinic, after everything had been discussed and checked I hesitantly murmured “Amy, did you want to ask any questions about pumps?”.
She did, the same answer came back about the cannulas.
She didn’t faint.
She asked a few more questions and I discussed the different pumps with the Doctor and the DSN. Things were going well.
As we walked out of the room the DSN got a pump they had and came back to Amy and asked if she’d like to see it.
She said yes.
She didn’t faint. We seemed to be getting somewhere.

Coming home from hospital

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25th December: Amy, 4 days before being diagnosed,
opens a present she’s wanted for a while

30th December 2010

Whilst the care we received from the staff in the Northbrook ward of Winchester’s Royal Hampshire County Hospital was nothing short of excellent there’s something about being in hospital that just makes you want to get out, quickly. At the same time you want to stay in for the security it gives you, knowing that if there’s a single small problem you can speak to a nurse and the appropriate care will be given. At home you’ve got similar options as you can phone the ward to get advice but most of us want to stand on our own feet and be able to cope ourselves. Most people hesitate until they need to call, meaning the problem has got (far) worse before you seek advice.

There were many factors that made us want to go home and for the nurses to find it easy to agree:

On top of the list above, good friends of ours were due to come for a Christmas get together and Amy really wanted to see them. We’d spoken about postponing the evening until later but Amy was having none of it, already displaying that she wasn’t going to let diabetes rule her life and stop her from doing anything.

We decided to leave hospital after Amy had had her early evening meal and had successfully done her injection. The nurse was there to watch her do her injection, it felt like a test, which if failed would mean Amy spending another night in hospital. She didn’t want that, we didn’t want that. Up to that point all of Amy’s injections had gone well; it was almost obvious what would happen next.

Amy chose her leg as the site and prepared herself. We watched, her sister watched, the nurse watched, Amy hesitated and hesitated. In my mind I’d decided that we’d be staying another night in hospital. Then Amy did it. I glanced at the nurse who was congratulating Amy. In my mind I decided that we’d be going home tonight. The meal was eaten and we prepared to leave.

Our friends arrived at home moments after us. We shared hugs without smiles and without tears, whilst sharing glances which conveyed words which didn’t need speaking. We were all glad it was them there at that time. Sitting around drinking and chatting and the world seemed a normal place again except for one thing, I wasn’t drinking. Well I couldn’t; what if I needed to drive Amy to hospital quickly?

The time came for Amy to do her first injection at home, it was her night time basal of Levemir. Jane and Amy went upstairs to do it in private at about 8pm. At points I went upstairs to try and assist, one of our friends did the same, but Amy wanted to do this herself. All different methods of assisting were tried but nothing worked and she wouldn’t let anyone else do it either.

Finally they came downstairs at 10pm. The first injection at home had taken two hours.

To read more check out Jane’s article on how the first injection at home went in the next post.

The smallest conversation can mean so much

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A cup of tea cures everything (nearly)
By Petr Kratochvil via Wikimedia Commons

30th December 2010

In the children’s ward at Winchester hospital there’s a room where parents can go if you need a little time out, without children. Equipped with kettles, fridges and toasters, a sofa and some chairs it offers a place to go and calm, or to scream if that’s what you need.

Jane and I went in there to have a cup of tea – tea of course cures all problems momentarily – and to chat about what had happened during the last 24 hours and specifically because the recent Glucagon training session had scared us somewhat. We’d also been told a little about Diabetic ketoacidosis (DKA) and it was all becoming a little too much.

After a few minutes another couple came in to and heard us talking about diabetes. They asked us about what had happened and how we were.

Then they told us a couple of things which, for me at least, helped an awful lot.

Their daughter had type 1 diabetes and was diagnosed many years before. They praised the staff at Winchester and said how good it was that they could if necessary go direct to the diabetes team for anything that was even remotely connected to diabetes. This meant no worry about getting the GP at the local surgery who knew diabetes inside out, or having to explain our situation again and again. This helped a lot.

Some thoughts crossed my mind: why were they here?; what was wrong with their daughter?; just how often do they find themselves back in hospital with her?

Somehow I managed to get the answer to all these questions without even asking as they sought to calm the worries they could clearly see written all over our faces.

“This is the first time our daughter has been back in hospital since being diagnosed, she’s just having a fever and we’ve found it difficult getting her blood glucose levels down. We called the hospital and they said ‘don’t worry, just bring her in and we’ll check her.’.”.

They probably never knew how much their words reassured us.

 

Does this mean I can’t go to India anymore?

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Ladakh, India
By Jochen Westermann via Wikimedia Commons

One of the things they did as soon as Amy was diagnosed was to give her a pen and a pad, so that she could write down any question that popped into her head. In the next 24 hours many questions were written down but there was one that surprised me, pleased and relieved a personal doubt I’d given myself.

“Does this mean I can’t go to India anymore?”

We’d been planning a trip to India, our second family trip there and it was going to be a big one: one month away and visiting the roof of the world, the Himalayas and the regions near by. The centre point would be Ladakh and a two day coach trip through the Himalayas from Manali to Leh. I’d been planning this for months, reading for hours a day and I was just about to buy the flight tickets.

As soon as Amy was diagnosed and when I had a few minutes to myself I thought about the trip and one thing made me decide we wouldn’t go, we shouldn’t go, we couldn’t go. The trip to Leh in Ladakh goes over mountain passes as high as 5300m and at such heights Acute Mountain Sickness (AMS) can be a real problem which can prove fatal if not treated quickly.

Dr Google told me one of the preventative treatments is to drink sugary drinks.
Sugary drinks + diabetes + risk of AMS = no way am I doing that.
(It turns out Dr Google was once again wrong but I only found this out many months later.)

When Amy read out the questions she’d written down I couldn’t believe that with everything currently going on she was worried about the trip. It was at that point I made a promise to myself never to let diabetes stop us doing something we wanted to do, to never let the ‘it’s easier not to do it’ attitude take control, as long as we weren’t going to be reckless. With recklessness in mind and because of my limited knowledge of AMS and even more limited knowledge of diabetes we decided to skip Ladakh and go elsewhere.

What resulted was a 2700 mile backpacking trip using overnight and daytime trains, over four weeks, from Amritsar in the north, to Goa. We prepared for the trip with our recently learned diabetes knowledge and with the hospital’s email addresses and phone numbers close at hand. Everything went very well and whilst we had a few diabetes related problems it never stopped us from doing what we all wanted to do.

But we never would have gone if Amy hadn’t had asked that question.

You can find out more about that trip by reading our Monsoon Meandering blog.

 

All aboard the diabetes coach

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By Feliciano Guimarães via Wikimedia Commons

On the 29th December 2010 Amy boarded the type 1 diabetes coach – destination unknown – and we all joined her. Luckily we can get off for a breather whenever we please, unfortunately, she can’t.

We were lucky that Amy didn’t go for too long before being diagnosed; she was only 22 mmol/l when admitted to hospital and whilst she’d lost a fair bit of weight she wasn’t very dehydrated and didn’t need to be placed on a drip. Afterwards, we estimated that she’d lost one stone (14lbs, 6.4kg) and how we didn’t spot her weight loss is a mystery to us all.

Come the next day – New Year’s Eve-Eve – life seemed completely different. Emilia and I went to the hospital to find two tired people who’d got some sleep inbetween the tears. Amy look bright, so much better than the day before and spent time talking with her sister whilst Jane and I spoke with the DSN about everything we needed to know for the next couple of weeks.

Amy had been given a pad and a pen to write down any questions she had. I took one look and was amazed the things that mattered to her to most. First on the list was ‘does this mean I can’t go to India anymore?, followed by quite a few more – see First questions from a newly diagnosed diabetic.

Whilst Amy and Emilia played some games on the hospital bed Jane and I were taken aside for the (almost freaked us out) ‘what to do if your kid doesn’t wake up training session‘.

Later we met with the dietician and had further chats with the nurses and doctor.

The quality of care from the moment we arrived at Sophie’s Place had been impeccable.

 

 

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

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Glucagon
Glucagon
By Intropin via Wikimedia Commons

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.

Diagnosis – the first injection

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Novopen, made by Novo Nordisk

After being told Amy had type 1 diabetes we were given some time to be together before one of the wonderful DSNs came back to enquire whether Amy was hungry as it was now dinner time. She was hungry, as she had been for the last couple of weeks.

Her dinner order was taken and it surprised me that she was immediately offered what we call ‘weekday food’ or more to the point ‘crappy food’, consisting of things like Smilies, which most 10 year olds like Amy adore. Of course I had the common misinformed opinion that type 1’s couldn’t eat certain foods and I guessed ‘crappy food’ fitted that bill.

We were transferred to the room which was to become Amy and Jane’s room for the night and a second DSN came in, saying that dinner would be ready soon and Amy needed insulin. It was all handled very, very well, with calmness, control and bucket loads of support from the DSNs. I really liked how everyone focused on talking to Amy, not the parents; it made complete sense but I’d rarely witnessed this before.

Then the horrible question came from the DSN: “Amy, who would you like to do your injection?”. I shuffled forward in my chair expecting to do it – remembering Amy’s fear of needles and Jane’s fear of blood – before I was stunned by Amy’s response.

“If I’m going to have to do this for the rest of my life I might as well start now.”

Waves of amazement preceded waves of pride which preceded waves of tears.

It was quite a slow process but she did it. I was so proud.

Diagnosis – a diabetic 10 year old’s viewpoint

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Amy, aged 10, in Ellora, India
international symbol for diabetes

Diagnosed 29th December 2010

Feeling poorly

I had been off school sick in early December, away from my friends who I missed. But it was only a horrible cold and I was sick once or twice. It was nothing to worry about, soon I’d be okay and back at school again.

I’ve always been pretty rubbish at knowing when I needed to go to the toilet but it was getting worse. I was getting really, really, really thirsty and ended up downing pints of water to try and quench my thirst but nothing seemed to work. The more I drank the more I went to the toilet and I remember noticing that there was no colour at all to my wee. But I don’t remember this happening at school at all, which is strange seeing that I was there for two weeks after I was ill and the Doctors say that the early December illness probably caused the problem with my pancreas. Perhaps there’s a delay.

We broke up from school for the Christmas break. I love Christmas because I get to have fun decorating the Christmas tree and seeing all of my family and I’ve got lots of them to see. I love the celebrations, the family ones and the chocolate ones. We’re allowed to stay up later, things are more relaxed, we can snack on chocolates if meals are a little later than normal. When I wanted a drink I’d get it myself, I’d even have my favourite Fanta if there was some in the fridge. It was great.

After Christmas I went shopping with Mummy and before I went out I remember saying “can I take a bottle of water with me” and Mummy said “don’t bother we won’t be that long”. But I did need it, I knew I’d need it and I was right. Why didn’t she listen to me? We’d only been at the shops 5 minutes and I needed the toilet so I went into McDonalds and used theirs. After coming out I complained I was thirsty and asked “can I have a drink”. Mummy said “but then you’ll need the toilet again”. I didn’t get that drink.

We went into Iceland and I saw a pack of fruit juice and pleaded for them. “No”. “No”. “Alright then if you’re really that thirsty”. I opened it immediately after we’d paid for it and drank it. Then I asked for another. I didn’t get it.

At the Doctor’s Surgery

The next morning Mummy woke me up and told me I had to go to the Doctor’s at 10am. At the Doctor’s Mummy explained about the drinking and toilet visits. He pricked my finger and took some blood which he tested but he didn’t really say anything. There was lots of words, I didn’t understand any of them but I didn’t think it was serious as Doctors just give you medicine which you take for a while and then you’re better.

I heard the word ‘diabetes’. I think that’s the first time I heard the word directed at me. I thought about my Grandad who I knew had diabetes and I knew it just meant that he couldn’t quite eat as much cake as he’d like to. I didn’t know there were different types. The Doctor said he’d phone the hospital and they’d call us if needed.

After the Doctors I went to one of my friends to tell her that I might not be able to come to her party and I gave her the present I’d bought her. When I got back Daddy told me that I had to go to the hospital at 3pm.

At the Hospital

It was only the second time I’d been to Winchester hospital. I don’t remember the first time as I was only 1 second old – I was born there.

I wasn’t worried at all. Hospitals didn’t worry me.

Sophie’s Place seemed really friendly and so did the people. They measured my height and weight and sat me down in the childrens’ in-patients area where they took my blood pressure. It still didn’t seem very serious and I felt quite calm.

We went into a room and a nurse came to see us. She said she was very sorry but I had diabetes and I would need to take something called insulin. I didn’t know what it meant but it didn’t seem very serious. She asked if I had any questions.

“Will I have this for the rest of my life?”.

“Yes, I’m afraid you will”.

I started thinking that this might be serious. I felt gutted, worse than gutted, the rest of my life! I remember looking at Daddy who looked really sad.

They told me they needed to take some blood and then left. They seemed to be gone for ages. I started crying with fear of the needle. They put something called a canula in my arm but before that they put on some cooling spray which really hurt. The canula didn’t hurt as much.

My First Injection

It was dinner time. The nurse told me I needed to have some insulin and we all did some practice injections on a stuffed case. Then she asked me who I wanted to do the injection.

“Me”.

I said this because I was scared that if Mummy or Daddy did it and it hurt then I wouldn’t be able to do anything about it. The nurse had said that the pencil case would be tougher to pierce than my skin and I was worried that Mummy or Daddy would do the injection too hard and it would hurt me. If I did it, I’d be in control and I could do it as softly as I could.

It didn’t take me very long to do the injection. I didn’t hesitate even though I didn’t know how much it would hurt me. I just wanted to get it over and done with.

I didn’t have any pyjamas, I wanted my teddies and Mummy didn’t have any food so Emilia and Daddy went home and to the shops.

They gave me my dinner, there were six Smilies and loads of other stuff. At home I only ever get 3 Smilies. I’d always wanted to stay overnight in hospital but not this way, but 6 Smilies! Hospital didn’t seem so bad.

Nanny and Grandad came over to look after Emilia and Daddy returned with some food for Mummy and some new pyjamas for me which Emilia had chosen. Soon it was time for bed and Daddy left. Afterwards I cuddled Mummy and cried, a lot.

Mummy and I settled down to sleep a little before they woke me up, as they said they would, at 2:30am so I could do another blood glucose test. We went back to sleep.

Diagnosis – a Mother’s viewpoint

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Jane, at the Kailash Temple, Ellora, India

On the 29th December 2010 Amy’s carefree childhood ended. I had no idea how a couple of days in late December would change our daughter Amy’s life forever and that of our family.

Amy and I were looking forward to a girlie shopping trip to Eastleigh on the 28th December to spend some of her Christmas money while her sister Emilia and her Dad went to watch footy.

But it all went wrong.

I reminded Amy to visit the toilet before we left (as she was quite often caught short) and she had a drink. We set off but within minutes Amy was saying she was thirsty and I remember being annoyed as she had already had a drink, so I dismissed her plea, not knowing this was a classic symptom of type 1 diabetes. As soon as we got there Amy then said she needed the loo, I couldn’t believe it, she’d only just been at home, how could she possibly need to go again? Little did I know this is another sign of diabetes. We dashed into McDonalds and I remember Amy had gone a very grey colour, unlike her.

Now when I look back I feel guilty that I was mean to her when none of it was her fault.

I decided to abandon our shopping as Amy wasn’t in the mood. She was still complaining of thirst and I was astounded when she downed a whole fruit juice in one go as Amy had never really drank vast quantities before. As soon as we got home Amy started drinking pint after pint of squash, interspersed with incessant trips to the loo.

Alarm bells were going off in my head.

I remembered a conversation I’d had with my best friend about her aunt who is diabetic but I pushed that diagnosis to the back of my mind, it wasn’t going to happen to my child. Instead I assumed it was a bad urine infection and knew I would contact the doctor in the morning.

The next morning I woke early and got an appointment for 10 o’clock.

I was still calm at this point. I recall the doctor testing her urine which had ketones in it (not that I knew what they were) then he wanted to do a fingerprick test. He produced a new glucose meter to test Amy’s blood – little did we know this machine would be so vital to Amy’s health for years to come. I was still in denial at this point as the doctor mentioned it could be diabetes and we would have to go to hospital to have another test. Niaively I asked him if we could postpone it so Amy could go to her friend’s party that afternoon. (I cringe when I think about it now.) The doctor promised he would ask the hospital, so Amy and I visited her friend to deliver her present in case she didn’t make the party.

By the time we returned, the doctor had already phoned to say we must go to the hospital at 3p.m. I still didn’t understand the significance of this. I suggested to Amy she wore a party top as although she’d miss the cinema, she might be back in time to go for the meal. How stupid was I?

As we arrived at Winchester hospital I remembered feeling very surreal, was this really happening? We entered the ward through Sophie’s Place, a waiting area for families set up by Sophie’s Appeal. I had had the pleasure of teaching little Sophie who sadly died, aged 6, after a brave fight. Seeing her smiling face on the wall was a lifesaver for me as it helped me put Amy’s condition into perspective. Diabetes was terrible but she was not going to die from it like poor Sophie. This one thought helped me to get through the traumatic hours that lay ahead.

The next few hours were a bit of a blur as the news sank in. The staff were fantastic. I remember going into a sideroom with the diabetic nurse, after Amy had another urine and
finger prick test, to be told she had Type 1 Diabetes. Kev and Emilia broke down into tears but Amy who was sat on my lap, kept asking ”Does that mean it’s forever?” as she couldn’t quite comprehend it all. I was numb but kept thinking she’s not going to die.

The nurses found her some left over Xmas presents to make up for the fact that she had missed her party but that seemed a lifetime ago. The really harrowing ordeal for me was when they put a canula in her hand to take blood. She was probably dehydrated which would have made it more difficult. Amy went berserk, she hated needles, she still does. At this point we were all in tears including the diabetic nurse.

The next hurdle was dinner as Amy had to inject before eating. Somehow this didn’t upset her as much as I thought it would, I guess the canula had been far worse. I remember Amy practising with the DSN on a cushion then I was so proud of her when she injected in her leg for the first time.

Amy devoured her nuggets and Smilies, she was starving! I then realised I was famished too. Kev and Emilia left to get Amy and me some overnight things. We were so totally unprepared, I had no idea we would spend the night in hospital. Luckily Kev also brought back some food for me, which I devoured, I was so hungry.

Amy and I were lucky enough to get a side room which was a godsend. Neither of us got much sleep. When everyone else had gone Amy sobbed ”Is this really for life Mummy?”.What an awful question to answer. Needless to say she cried herself to sleep.

Diagnosis – a Father’s viewpoint

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Male symbol mixed with Diabetes symbol

Whenever I think back to Amy’s diagnosis there’s a part of me which harbours a nagging doubt about whether a particular event played any part in the start of the autoimmune destruction of Amy’s pancreas. I know what the doctor’s say, that it just happens and you can’t do anything to stop it, but surely they’re wrong: if a person doesn’t get ill in the first place the autoimmune system won’t attack the pancreas. I guess we’ll never actually know until they pinpoint exactly the cause of type 1 diabetes.

Amy had been ill with the usual cold/man-flu/call-it-what-you-will which afflicts most people as soon as kids go back to school, the days get colder and the heating gets switched on. I had tickets for her and me to go and see her first ever gig, the dance act Pendulum at the BIC in Bournemouth on the 7th December 2010. During the week before with Amy still suffering we debated on whether or not she should go but I put my foot down and insisted it was only a cold. If you’ve never been to a Pendulum gig watch this and you’ll understand just how hot you get – by the end of the evening we were completely soaked (I know, euw!). It was a late night out for Amy so to help her stay awake we bought and consumed lots of her favourite orange fizzy drink. It was full on sugar. She was still quite poorly a few days later.

Back to the diagnosis story.

On the 28th December 2010 Emilia and I went to see Southampton FC demolish Huddersfield 4-1 and returned in bouyant mood to hear about Jane and Amy’s shopping trip and the impending visit to the Doctor. Diabetes was briefly discussed and a quick Google confirmed what I already knew, that if Amy had diabetes it was type 1 and that meant injections for my little girl who has a fear of needles. I was devastated at that possibility.

The next day Jane and Amy went to the doctors – read the Diagnosis post – whilst Emilia and I stayed at home. When Amy went to see her friend about the party Emilia and I stayed at home and that’s when the phone rang.

I took the call which said we needed to go to the hospital that afternoon, at 3pm. Emilia had stuff to do and didn’t want to come to something that was a routine appointment so I (somewhat harshly) told her the reality of what the visit was likely to mean and the daily injections which Amy would have to endure. You don’t get a call back so quickly if everything’s okay.

During lunch I watched Jane, she seemed so calm, I couldn’t understand how. We left for the hospital, totally unprepared for an overnight stay, they could have warned us.

In the consultation room we all sat down as the DSN spoke to us. I could see it in her eyes already, clearly breaking news like this didn’t come any easier through repetition, and I just waited for the words ‘type 1 diabetes’. I looked at Amy and Jane and there wasn’t much of a reaction; Emilia, like myself, looked full of tears, as did the DSN.

The next hour or two was a blur. I’ve no recollection of what happened next.

It was dinner time and Amy needed to inject insulin, or bolus as it’s really called, and she opted to do it herself. I was so proud, she was only 10.

Emilia and I left to go and get some pyjamas for Amy which meant a trip back home. We knew that the local Marks and Spencer’s would be open so we decided to buy Amy some next pyjamas as a treat. After some food and back at the hospital and Amy seemed okay but had clearly shed a few tears. I gave some food to Jane, spent some time cuddling and talking and left my little girl and her Mum to spend the night in hospital.