#DBlogWeek 2014 Day 1 – Change the world

dblog week 2014Monday’s topic:Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.


One of the (many) things that gets me fired up is the headline ‘diabetes is going to bankrupt the NHS’ that you see splattered in news stories occasionally. Articles appear in many online media article, like The Guardian, Sky, The Express and The Daily Mail. At least the NHS filled us in on the stats.

As well as the stories we hear that the people with the purse strings want to privatise elements of the NHS to farm off their ‘problem’. Yet at the same time some of the advice or practises seem to either waste money of give advice which is contrary to current thinking.

 
Without the NHS I see that our family could be missing one rather special thing, Amy.

My ‘change the world’ blog is more about changing the minds of those in Government and my words to them are simple:
Back off.
Change your plans.
Do you realise what an asset you have, the envy of a world which looks at the NHS for the care that it gives, not the money that it costs?

Rather than stop there I’ve got some ideas on how you can change things, although nothing below is diabetes related. As a caveat I have absolutely no medical training, so the following might just be stupid pipe-dreams born from reading and misunderstanding things far more complicated than I realise.

  • Change your focus on Cholesterol and get rid of the Eat-Ill plate – ok it’s the Eat-Well plate really – and prescribe some decent modern up-to-date advice, to adults, to parents but most of all to kids. You’ve got fantastic support from the likes of Zoe Harcombe (@zoeharcombe), so use it and rid Britain of this metabolic disease. Less obese people means less money you’ll have to spend on medication.
  • Only prescribe Statins to those that actually need them. The NHS already knows it’s over prescribing statins. You’ve got fantastic support from the likes of Dr Asseem Malhotra (@DrAseemMalhotra), so use it and save some of your budget.
  • Make sure that nothing can be prescribed on the basis of a single ‘high cholesterol’ figure which isn’t broken down. I’m happy to have high cholesterol if it’s all HDL or the ‘good’ LDL. This one will of course help the one above.
  • Come to think of it if the EatWell (*ahem*) Plate was changed and favoured less carbohydrate wouldn’t that reduce your bills for Metformin and Insulin? Remind me how much that costs you again.
  • Surely millions could be saved by giving easy and cheap access to sport and leisure. There’s thousands of homes soon to be built near where I live and work but I don’t see cycle lanes high on the agenda but they could be and it could all be paid for by the developers, not you, just make them do it. There will be lots of parking no doubt for fuel guzzling cars. Tell me, in the long term will you ‘gain’ more money from cars or making people healthier?
  • You know that all types of Diabetes are growing, so how come you are investing less than many countries? JDRF’s CountMeIn campaign has hopefully shown the Government how low our research grant is compared to other countries. You have numerous MPs in the likes of George Howarth, Caroline Noakes and Jamie Reed who could tell you lots more. So, up the research grant, help find a cure and/or prevention and help eradicate diabetes full-stop.
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    dblog week 2014

Getting an insulin pump – a superb 24 hours

A busy (sinful) 24 hours

Since waking up yesterday morning, Jane, Amy and myself have had a great 24 hours, almost a day of celebration of the new pump, a day of treats and especially a day of saying ‘what the heck, just have it’. On reflection this may not have been the best policy on only day 2 of a pump, it just snowballed.
I’ll hold my hands up then and say that on the face of it today we’ve been pretty irresponsible, we’ve let our daughter got all out and eat want she wanted. I’ve made sure we ended in places where she’d say ‘ooh, can I have that?’ so we could let her.
It wasn’t meant to be like this.
A couple of weeks ago we chatted about the impending first 24 hours on the pump and said that we would be good, eating only normal food and stuff that we could easily calculate the accurate carb value for. This was especially to make the carbs/insulin matching accurate so that we knew that glucose fluctuations would be mainly down to Amy’s basal insulin, which the pump delivers every few minutes. This in turn would help our DSN (diabetes specialist nurse) make adjustments to Amy’s basal profile, something that is crucial to the pump being a success.

Early rush for clinic

Amy’s 3 monthly clinic appointment had been booked for yesterday since the last one in March, on the 15th.
That was the one where Amy first saw a pump and later had her epiphany moment and said “I want a pump”.
So our ‘time to pump’ was one clinic, or a little over 3 months. (15th March to June 20th). It could have been quicker if I hadn’t been researching pumps for so long.
Clinic was at 10am, we only just made it.
It was strange being back there the day after the time before, the only times this has happened before for Amy was when she was diagnosed and before that, when she was born. She didn’t remember the first time for some reason.
Whilst I have no experience of other clinics can I just say that I blinking love this one: everyone is part of one team, a team which encourages, helps and listens.

The dreaded hbA1c check/result

For those of you who don’t know the hbA1c is a blood check which in layman’s terms tells the Dr how ‘good’ you’ve been for the last 3 months. It’s a little more complicated than that, but that’s the gist. Many argue that hbA1c is not a good test as you can have a ‘good’ result whilst living a life of hypos and hypers, with blood sugars rollercoasting, whilst a ‘bad’ result could be achieved with very little fluctuation. Many, including me, would argue that the latter (‘bad’) is a better thing to strive for. Dave Sowerby’s article delves into the HbA1c check in more detail.
Amy was generally 7.3 but in December rocketed to 8.3, in March she was back down to 8.0.
I feared for today’s result as she’d been high on average for weeks. We’d done nothing about this as she was going on a pump and it seemed little point changing things about.
The result came in….
8.2
Phew! I was amazed it wasn’t a little higher.

First up: DSN

Our DSN and Dietician attended the first part, looking over the last 21 hours (since going live on pump) log book information. This felt strange, we were only talking about 21 hours, not the normal three months.
They were pleased with the progress made already, amazed at how well Amy looked and felt about the pump, applauded the BG values and corrective doses.
Whilst the DSN said not to bother two-hourly testing through last night, I suggested that we were happy to do it if it meant her basal might be easier to get right.
She agreed and said she’d give us a call – in her own time – sometime later this morning.

Second up: the Doctor

Some people dread the first few minutes of an appointment with their Endocrinologist, but not us, for one simple reason: she always starts with ‘how are you Amy’. She always talks direct to Amy, she leads with questions about her wellbeing and doesn’t lead with ‘your hbA1c result showed that…’.
I love this approach.
We spoke mainly about the pump, how it was going, what it felt like, did the cannula hurt and things like that.
I asked how she found the training day the day before, trying to elicit a response about the Animas pump. I wanted to try and see if there was any issue with us wanting the Animas Vibe and daring to challenge the de-facto standard issue of Medtronic or Roche.
“I like that pump, I think more people may get that one here. What were the reasons you really wanted it?”
This was excellent news, there was no problem about us wanting the Vibe and great news that the Doctor liked it. I went through the many, many reasons we chose Animas over the others.
We offered to come in to do demos for other parents/children who were looking at pumps.

Costa: an easy place for diabetics

It was 11:30am, Jane and I were knackered after a lack of sleep last night. I needed caffeine, so we hit Costa in the hospital grounds.
“Have what you like Amy”
“Really? O.M.G. I’m having that” as she pointed to the Mango and Passion Fruit Ice Cooler.
I should explain that normally Amy would just have water, it’s 0g carbs, or at best a Diet Coke, never something she’d need to bolus for as that would mean another injection. Now it doesn’t, just a couple of button clicks.
Amy at Costa
Jane asked how many carbs and the Barista asked where were sitting and that he’d be one minute.
He turned up with a huge book which he said listed absolutely everything they sold. And it did.
The drink was a massive 55g of carbohydrates, so Amy bolused 4.25 units of insulin for it. What was nice was that she didn’t do a blood test for it, just used the ‘ezBG’ feature to match the insulin to the carbs consumed.
She loved that drink, she loved the feeling of having things she’d denied herself for years.

Retail therapy

We spent the day with some retail therapy, visits to fast food places (which we never normally do) and even succumbed to buying a box of Krispy Kreme doughnuts for film-watching time later that evening.
Amy was ecstatic at the new world opening up to her.
We did have a discussion about everything returning to normal today.
Later that evening I reflected on the way forward:
tweetjabba

Two hourly testing results

We’ve got to test Amy’s blood glucose levels every two hours for the 48 hours after having pump. This is something everyone going on a pump seems to do, although for many they have to do it for a week.
Amy’s levels have been:
Time, BG mmols, correction dose
06:00, 3.6, 9g carbs (mis-calculated carbs for 3 dextro, thought it was 5g each, it’s only 3g! Discovered mistake 30 minutes later)
08:00, 5.7
09:00, 4.9
10:00, 5.9
11:00, didn’t test but had 55g smoothie drink, 4.25u insulin
12:00, we were travelling so we forgot/missed this check
13:00, 7.4, lunchtime, eating huge 105g carbs so had 8.05u insulin
14:30, 4.2, 9g carbs, Amy felt hypo so even though technically wasn’t she had 9g to make her feel better. It worked.
15:00, 3.6, 15g carbs, clearly 30 minutes she was dropping quickly
16:00, 6.5
18:00, 14.2, 2.55u insulin, clearly the 9g+15g Dextro tabs earlier had caught up with her
19:00, 11.7, dinner of 56g so took 6.03u insulin – 4.3u insulin for the food, 1.73u insulin for the correction to bring her levels into range
20:00, 6.8, 40g carbs & 3.05u insulin – post-dinner treat doughnut
22:00, 4.1, 24g carbs for a milkshake, no insulin suggested
00:00, 14.7, 2.35u insulin
02:00, 8.8
04:00, 9.1
06:00, 8.0

Considering what a ‘treat’ day it’s been those figures are amazing.
#Winning

Getting an insulin pump – through the first night

Back at home and bouncing with joy

We arrived back from the hospital with pretty good glucose levels. It was about the same time Amy’s friends were leaving school.
She texted them “I’m home, come over and see my pump”.
10 minutes later several friends turned up and they stayed outside talking in the garden. 20 minutes after that and Amy’s gone hypo (2.6mmol) as they’ve been bouncing on the trampoline, a lot.
I remembered the conversation from earlier about testing out the temporary basal rate; what an ideal time that would have been, if only we’d thought about it.

First extra bolus at home

Amy had already done her first extra bolus at hospital for 3 chocolates, it had gone well. This was a big thing for Amy as she has missed out having snacks/treats for 2.5 years.
She’s always had the choice to have snacks when others are but if they’re more than 15g carbs then she should give some insulin for it. She hates injections with a passion and virtually always chose not to, thereby missing out on snacks. Only now have I realised how much stuff we’ve stopped doing because of this, such as going to the cinema and having a snack during the film. So looking forward to these things now.
Anyway, yesterday afternoon Amy wanted a snack and chose one of the iced buns we’d bought that day. Its 23g carbs would have needed a bolus so on MDI she wouldn’t have had it. Now though, there was nothing stopping her so she tested, bolused and ate. It actually took longer to eat the thing than prepare to eat it. That’s a big bonus.

Fast food

No, don’t panic, we didn’t hit the fast food restaurants last night, but we did have fast food…let me explain.
The normal meal time routine involves calling Amy 10 minutes before dinner is ready; getting her to do a BG test; calculating her carbs (with her) whilst serving up the food; eldest daughter goes and eats; we stay behind to do Amy’s injection; Amy finally gets to eat.
We’ve kind of got used to food starting to go cold, it almost seems normal.
Last night’s meal was different in that Amy carb counted and immediately bolused, in seconds.
The ritual of preparing the injection site, preparing the needle, hovering the needle over the site for what seems an eternity, doing the injection…these have gone, disappeared, hopefully forever.
Eating hot food just might catch on again.

Two hourly testing results

We’ve got to test Amy’s blood glucose levels every two hours for the next 48 hours at least. This is something everyone going on a pump seems to do, although for many they have to do it for a week.
Amy’s levels have been:
Time, BG mmols, correction dose
16:00, 2.6, 9g carbs – should have been 15g but we mis-calculated Dextro carbs
17:00, 5.2
18:00, 7.2
20:00, 3.1, 9g carbs
21:00, 5.2
22:00, 9.2, 0.3u insulin
00:00, 11.7, 1.55u insulin – we would never have done a correction like that before
02:00, 4.2, woohoo, that last correction worked
04:00, 4.7
06:00, 3.6, 9g carbs – interesting as to whether this is hypo or whether 3.3 is the limit
08:00, 5.7

I’d call that pretty darn good.
#Winning

The Portsmouth “SweetMeet”: A privileged invite

Many months ago Dr Kar from Portsmouth’s QA hospital tweeted a question to the diabetes online community to see if there was any interest in an idea he (or his team) had: would people like the opportunity to meet with healthcare professionals outside of the normal setting, asking questions openly and receiving open answers.
The response was positive, especially from me, and the QA team set up organising the event.

Why?

The need for an event like this was clear to me: it would give a chance to speak openly with professionals who don’t have a defined set of questions to get answers to, or things they have to inform us about. I could ask those questions which seemed silly to me, the sort of things I don’t want to waste anyone’s time over, the sort of thing I would definitely not call the clinic about.
Clearly others felt similar things.

Progress, announcement, sadness, happiness

I’d been following the discussion about the SweetMeet before my Twitter friend Laura even put that name forward. I was excited about attending, along with Amy.
The announcement came out that it was on the 11th May and was open to any type 1 diabetics…who were over 17.
Darn it, Amy’s only 12, I can’t go.
I wished Dr Kar luck but said it was shame I wouldn’t be able to go and he replied by saying he had the power to break the rules for certain individuals.
Great, we’re in, I was happy again.

A simple terms of reference

Initially it was difficult to figure out what the event would be like until Dr Kar coined the phrase “Speed Dating With The Professionals”.
Now it all made sense.
The mention of free bacon sandwiches smoothed the way for many I suspect.
The layout of the morning was set as follows:
– welcome & introduction by Dr Kar
– a speech about patient experience by my friend Laura Cleverly
– speed dating with the professionals
– a speech by Dr Cranston about what’s on the horizon for type 1 diabetes
– an open forum with Lisa Skinner, Diabetes Nurse Specialist

The funny moment of trying to register

When trying to register for the event I called and spoke to a lady who took my details.
“Your name?”. I gave it.
“Your address?”. I gave it.
“Can I just check that you’re over 17 and have type 1 diabetes?”. “Erm, well actually no, but I’m allowed to come, just put me down and ask Dr Kar.”.
“Erm, okay” she said.

The event starts

Driving to the event today Amy and I wrote down as many questions as we could, just in case we got the opportunity to ask them.
Arriving this morning we registered and met with Laura and quickly found the bacon rolls, mmmmm bacon!
We looked at the stands and happened across the one run by the widwife team. “Okay, Amy we don’t need to worry about this for a little while”. Instead of moving on we had a really good chat with the two midwives there.

Ladies and Gentlemen take your seats

It was time to take our seats and when walking into the room we headed to the back only to be greeted by a “hello Kev, what are you doing here?”. It was a guy from work, a guy who I see often, a guy I’ve played football with for years, a guy who had type 1 diabetes, yet I never knew.
It was great to bump into him and have a great long chat about diabetes care, pumps and stuff.

Intro by Dr Kar

Dr Kar is an eloquent speaker, a great advocate of good service by his team and someone who could literally talk for Britain, but in a nice way. He’s so enthuastic about being able to work together (patients and professionals) and shape the future together that listening to him talk about it makes you feel so positive.
He spoke about how the event came about, the ideas, the desires and then he passed over to Laura.

Laura’s story

I only got involved with the Diabetes Online Community after a friend spoke about Laura’s Ninjabetic support group (read this) being in the news. We’ve spoken on Twitter so many times that Laura seems like a member of the family and I know her story so well.
Laura, Mark and I had tweeted earlier in the week about Laura’s speech: she didn’t know what to say. She suggested the three of us do a flash mob but luckily Mark and I turned it around and suggested she just spoke about herself, about her diagnosis, about her salvation from the dark days of ignoring diabetes care.
She spoke from the heart about her diagnosis, a story I could relate to so well, a story I knew off by heart. I was quite moved, more than I’ll admit to for sure. My tweet sums it up:

Speed dating starts

We all sat around the 7 tables, there was six on ours including me, Amy, Laura (@ninjabetic1) and Mark (@thedteam2) who’d travelled all the way from Swindon, plus two other guys from the Portsmouth area.
Each of the 7 professional people/teams switched from table to table to table in true speed dating fashion, having 8 minutes each.
In those 8 minutes we had to get through multiple questions from our side and theirs. This event wasn’t just about patients getting answers it was also about professionals finding out what patients require, so that they can improve their service.
All in all it worked very, very well, it was just that 8 minutes wasn’t enough, we could have done with about 30 minutes each, but that just wouldn’t be realistic.

Meeting Derek, refreshments and quiz time

At 11:15ish we broke for refreshments which gave me a chance to chat with my friend from work. Whilst talking 76 year old Derek Bockett said hello and we had a nice chat. I recognised him from last year’s JDRF Walk To Cure which we’d done. He’s an amazing chap, 76 years young, full of life, fit as a fiddle and has had type 1 diabetes for 61 years! He told us to keep active and make sure we kept ourselves well. What a great advocate for diabetes.
Amy came up and asked me to fill-in the carbohydrate counting quiz: she’d done it and wanted to increase our chances of winning the prize. I didn’t bother.

Talk by Dr Cranston

Back in the room and Dr Cranston (Consultant Diabetologist – and more importantly Laura’s pump consultant) gave a great presentation about what’s on the horizon for type 1 diabetes, current stuff, future stuff and some quite complex stuff. I enjoyed the talk even if some of it flew right over my head.
I really admire Doctors who give talks like this. As a geek I know how hard it is to get things across in a language which is understood by the layman, without comprising what you need to say and the points you need to get across. Dr Cranston did this extremely well.

The quiz result

It was time for the carbohydrate counting quiz result.
Who had guessed the right amount of carbs for a Sunday Roast and a Spag Bol? Not on the same plate you realise, there was two plates 🙂
“The roast was 50g”. Amy whispered an emphatic “Yes!”
“The spag bol was 90g”. Amy wispered “darn, I said 100g”.
“And the winner is….Amy Winchcombe”
I let out a “Yesssssss!”
The problem was the the prize was a bottle of champagne and Amy was 12 and it wasn’t good form for a healthcare professional to be giving alcohol to a 12 year old. I said that that’s the standard age to start drinking in Portsmouth but (luckily) no-one heard me.
The champagne was given to Laura, sat next to Amy, who put it on the table.
Yay, we’d (erm I mean Amy had) won some champagne.
I’m so proud that in a room full of diabetics many of whom have counted carbs for years that Amy’s knowledge proved the best. Well done Amy.

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.
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

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.

Travel in India with type 1 diabetes – Amy’s first few food days

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 11 in the series about that trip and its planning and how type 1 diabetes played a part.
This post is all about Amy’s first few days.

Honeymoon and counting carbohydrates

Amy had only been diagnosed 7 months before we travelled and was still definitely in her ‘honeymoon’ period. Just for the record that word ‘honeymoon’ should not be used for type 1 diabetes, it’s not fun like the real thing, although in a similar vein it can feel like your life has been <insert-your-favourite-past-tense-procreation-word-here>.
At this stage we were not carbohydrate counting and her insulin doses were based around a rough estimate of the size of the meal and whether it was heavy or light on the carbohydrates. Our carbohydrate counting training was scheduled for a month after we returned, but how I wish we’d known about it beforehand.

Breakfast is for wimps

I mentioned in the paragraph ‘A word about flight times’ (flying, medical letters & adjusting basal) that we took a day time flight to India, landing just before midnight (Indian time, 7pm BST, 6pm GMT), how well that worked and that our body clocks didn’t adjust for days. For this reason meal times were all over the place in the first three days and we were generally never awake early enough to have breakfast until day four.

A madly active first few days, no time for hypos

We only had three days in Delhi and we had a lot to do: food at Karim’s (video); a meal as honourary Food Enthusiasts of Delhi; Sunday lunch with my friend Madhu; Sunday dinner with my friend Gautam and his family.
Food times were all over the place, but we’d eaten so much that Amy didn’t have many hypos as the insulin we gave her was probably lower than it should have been.

Day 4: “I don’t like Indian food anymore”

These weren’t the words we wanted to hear but that’s what Amy declared on day 4.
Both kids have always been excellent at eating Indian food, from the moment we introduced “International Food Sunday” to replace the typical roast, although we never got much past “this week let’s try Indian” as they liked it, so many Sundays afterwards featured a Sunday Curry.
Amy had been fine eating Indian food virtually every day during the 3.5 week trip in 2009 bar the odd pasta day. But within 4 days it was all over. We’ve got a problem.

Injecting in not-so-posh restaurants

As a family we rarely eat out so haven’t faced any problems with injecting within the restaurant or having to take Amy somewhere away from the tables, so India brought us a new experience. How would it go we wondered, would she be self conscious, would it put her off if people stared?
For the first few days we’d only eaten a couple of times in restaurants and they had been relatively medium-budget places with nice dividers between the tables, or lovely washrooms. We hadn’t yet tried doing injections somewhere crowded, or just a room full of tables.
On day 4 we had gone to Amritsar to celebrate Jane and my wedding anniversary and I was determined to go to a really out of the way, almost locals only, restaurant named Kesar da Dhaba.
Kesar da Dhaba looks like a UK cafe with its plain uncovered wooden tables, its metal beakers and thali trays for food. There’s no knives or forks here given out by default, you need to request them. We requested 3 lots, I decided to go local.
Amy didn’t eat much, it was a bit too authentic for her liking but she wasn’t daunted by anything, bravely trying the different dishes but only really eating the Shahi Paneer and Aloo Gobi and multiple roti/naans.
When it came to do the injection everything went very well, doing it at the table without anyone really caring at all. We’d forgotten that India until recently was the diabetes capital of the World – now second to China – so everyone had seen it all before.
I believe going somewhere like Kesar da Dhaba really helped us realise that in general there would be no problems coping with injections during our trip.

Hypo, hypo, hypo and forgetting advice

Amy started having a few hypos over the new few days and it took us a few meals to realise why: we were giving pre-meal injections based on what she thought she’d eat but often she ended up only eating part of it, due to her new found dislike of Indian food.
We’d forgotten the advice that injecting after the meal was probably a better idea as when eating Indian food at home Amy had eaten everything put in front of her.
It didn’t take long to remember the advice and changing to post-meal injections seemed to settle the hypos somewhat.

Discovering the food issues

We tried to work out why Amy had suddenly formed a dislike of Indian food as this was likely to make the rest of the trip quite tricky.
A few months prior to the trip Emilia had decided to go vegetarian, something I applauded after doing it myself for a few years. I was also wary of eating meat after wondering whether it may have been the cause of my 2009 downfall.
Due to these two facts we’d so far predominately eaten vegetarian and specifically our dish of choice had been the sublime Shahi Paneer, unless of course you’ve just decided you dislike Paneer. That was it, she hated paneer, but didn’t really know this herself until she’d eaten it over several consecutive days, something that never happened at home when we had paneer.
It was really worth spending the time trying to discover where the problem lie as it made the rest of the trip easier.

Next up – The homestay adventure

Travel in India with type 1 diabetes – food glorious food

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 10 in the series about that trip and its planning and how type 1 diabetes played a part.
This post isn’t really related to diabetes per se but hopefully contains a tip or two for you.

India – a food lover’s paradise

One of the great things about going to India on holiday surely has to be the food. Everyday you get to eat a different variety of Britain’s National Dish, although ironically you won’t find Chicken Tikka Masala anywhere in India apart from 100% foreigner focused hotels. As a note I’d suggest that if you ever come across a restaurant selling Chicken Tikka Masala run a mile and look for somewhere a little more authentic.

Once bitten, twice shy

If you’ve read my blog from our first trip with the kids in 2009 you’ll know that I was a very poorly chap (That’s The Last Time I Joke About Dysentry!). Going back in 2011 I was naturally quite worried of what lay ahead and even more worried that rather than get hit myself with Delhi Belly that Amy might get poorly, resulting in high blood-glucose levels, ketones and worse DKA (diabetic ketoacidosis).

Delhi Belly is avoidable

Many people will avoid going to India after hearing a horror story from their long-lost-Uncle’s-best-friend’s-cousin – i.e. someone they’ve never met – and how that person got really ill. Well, I could give you stories like that from people that have stayed in the UK too.
‘Delhi Belly’ is avoidable if you eat wisely and trust your instincts so don’t think that any trip to India will end up with you getting very ill.
Listed below are a few of the things I live by when abroad but do bear in mind there’s no scientific facts behind any of it, it’s just my opinion.

Simple rules to stay healthy

It’s not the food that makes you unwell

In my experience it’s not the food which makes you – read me – ill, it’s the way it’s cooked, or actually the way it’s prepared.
I’ve eaten all manner of things during my travels – Brain Curry being the oddest – and never suffered when I’ve known the food has been cooked from fresh.

Trust your gut reaction

I can pinpoint my 2009 illness to the hotel we stayed at in Jaipur. When I took one look at the restaurant I decided I didn’t like the look of it but laziness got the better of me so that’s where we ate that night. The food tasted so good, I ate so much and although felt poorly the next day we still returned to the same restaurant the next night. I knew that place didn’t “feel” good and from here on in I will always trust my initial thoughts about a restaurant. (see the last rule too.)

If it’s still sizzling it’ll probably be okay

After 90% of my wedding party were poorly in Thailand back in 1994 I’ve always lived by the simple food rule that in foreign climes I’ll only eat something that’s pretty much still boiling/sizzling. This has served me well throughout Turkey, Thailand, India and Nepal, whilst seeing those ‘I’ll-just-eat-this-salad-because-I-recognise-the-food’ types getting very ill instead… see the next rule.

Don’t eat it if it’s cold and washed in water

My wedding guests and I all got ill after eating during a buffet cruise down the Chao Phraya river in Bangkok. We were very, very ill and after working out who ate what we realised it was the rice dish. Since then I’ve pretty much avoided rice whilst abroad, but I shouldn’t have, not if it had just been cooked and was hot…see the next rule. People I met in Turkey were eating salad because they recognised it and didn’t recognise all that ‘foreign rubbish’ – I know, I know, why go abroad!? – but their salad was cold and washed in water not up to UK standard, so these people just got worse and worse each day. If they stuck to eating a nice flame-grilled shish kebab as we did they would have (probably) been fine.

Don’t avoid the rice

I’ve avoid rice for so long whilst abroad but all for the wrong reason: what made us ill in 1994 wasn’t the rice, it was the fact that it had been cooked, cooled naturally and reheated a little, all in humid climate and on board a probably not-so-clean boat. In 2009 after being so ill the only thing I could eat afterwards for days was plain boiled rice. How ironic that the thing I’d avoided for so long made me well again.

The look of a restaurant isn’t everything

Whilst taking a 5 hour drive in India we pulled up at a Dhaba – Indian roadside cafe – which basically has a roof but no (or not many) walls. There was an air-conditioned restaurant next door but wanting to get the full Indian experience we entered the Dhaba. We chose a table at the back and when pulling the chair out the World’s fly-population evacuated and my heart dropped for a second. I’m not the sort of person to be put off by a fly, or two, or a thousand.
“Right, we’ll still eat here but only choose something deep-friend”.
We ordered a couple of plates of pakoras (deep fried mixed vegetables) and some finger-chips (or French Fries to you and me). We could see into the kitchen from where we sat and I could see that it was all being freshly prepared for us.
It worked, our pakoras tasted great, no-one even had a hint of being unwell and we’ve used the “deep-fried” maxim occasionally ever since.

Next up – Amy’s first few food days