Amy’s JDRF T1Kids magazine article about India

My daughter, an author, wow

Today the latest JDRF T1 Kids magazine hit the doorsteps of houses around the UK, being delivered to thousands of children who have type 1 diabetes.
I’m immensely proud that Amy has a two page article within it and even more proud that a picture I took of her fills the front cover.

Thank you JDRF

I’d like to thank JDRF for many, many things but especially today for printing Amy’s article.
Special thanks go to Kate from JDRF, who has been so helpful organising this from their end, encouraging us, giving us ideas and creating the final article from a mass of words sent to her.
Thank you Kate for giving me permission to reproduce the article on my blog.

How did it all start?

We’ve been subscribed to JDRF’s T1Kids magazine for a while now and have read the articles with interest. In early January, whilst thinking about how to motivate Amy as part of my New Year’s resolution I came across a request for articles for the magazine.
Well, let’s think…hmmm….my newly diagnosed 10 year old backpacked around India, had a great time and survived. Yeah, that’s an article. Actually though I first suggested that JDRF read Amy’s auto-biographical blog article on her diagnosis and only mentioned India as ‘maybe you’d be interested…’.
I pinged off an email to JDRF which got to Kris – whom I’ve only just realised is someone I’ve followed on Twitter for ages. He passed it straight to Kate who’s in charge (I think) of producing the T1Kids magazine. She was very interested in the idea of an article about India as they’ve not had many/any like that before.

From blog article to magazine feature

First I needed Amy to do the full article for our blog as this was to be the final one in a 14 part series about our trip to India and dealing with type 1. It took a long time to get round to this due to other commitments. Here’s a link to the series of articles: Travel in India with diabetes and Amy’s India blog article.
The article was sent to Kate, who then reworked it to fit the magazine style. Amy had written so much that it gave Kate a hard time trying to figure out what to cut.
A few proof checks here and there and on 24th April we received the pre-print version in all it’s glory.
I was amazed how good it looked, all typeset with the paper elephants everywhere.
Amy was so chuffed.

Opportunities through Diabetes

This is a shining example of how opportunities to break out of the box come from having something like diabetes.
Don’t get me wrong, I’d prefer that Amy never wrote this article because I’d prefer that she didn’t have diabetes, but she does so let’s just get on with it and seize opportunities like this when they occur.
Well done Amy for seizing this opportunity. So proud.

Do you want to get hold of the magazine?

If you just want to read the article you’ll find it below, but perhaps you want to subscribe to the magazine for you or your child to read.
Here’s the links to do just that and the good news is it’s free, although I’m sure you’ll give JDRF a small donation whilst on their site 🙂
Order a single copy
Subscribe to the magazine

The front cover

T1 Kids Magazine front cover

The main article

The main article is split across two facing pages but I’ve split it so you have a chance to read it.
If you can’t quite read the images on this page either click them to open them up in full within your browser, or better still just use CTRL and + to – to zoom your browser in and out (works with Firefox, Chrome and Internet Explorer). In some browsers you can hold CTRL down whilst scrolling your mouse’s scroll wheel.
T1 Kids Magazine left page
T1 Kids Magazine right page

Travel in India with type 1 diabetes – the diabetes travel kit

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 5 in the series about that trip and its planning and how type 1 diabetes played a part.
The first part of it has been reproduced from the Monsoon Meandering blog article I wrote.

From my original article…

Most of the planning and preparation for this trip has been going really well but we still had one area of concern: the diabetes medical kit. Today we decided to sort that one out so we could relax a little more.

As a little background, after the last trip where we used very, very little of what we actually took we vowed that any medical kit for future trips would be small, very small. For our main medical kit this maxim will still ring true and it’s a good job because we’re taking rather a lot of medical stuff for Amy’s diabetes management.

So here it all is. Well actually it’s not all there, we’re taking double of everything you see in the picture, split across two different bags just in case one gets lost or stolen. This may seem a little over the top but there’s no way I’m risking losing a bag and being in the middle of nowhere for a few days with no Insulin immediately to hand.

Roughly in a top to bottom, left to right list here it all is: Accu-check control solution, Ketostix, Accu-check sterile lancets, Novo-pen 4mm needles, Accu-check testing strips, Novo-rapid insulin spares, Novo-rapid pen including cartridge, Levemir pen including cartridge, Glucogel, Glucagon, Accu-check blood glucose testing kit, Detro tablets, spare battery for Accu-check meter

Each bag’s worth of supplies can be broken down like this

To keep any medical supplies cold
– 1 x extra large Frio wallet

For blood/glucose level checking
– 1 x meter with multi-clix lancing device
– 34 x multiclix units, each containing 6 lancets
– 150 x Accu-check testing strips
– 1 x Accu-check control solution to test the meter if required

For the injections
– 1 x Novo-pen for Novo-rapid insulin, kept in a Frio wallet
– 1 x Novo-pen for Levemir insulin, kept in a Frio wallet
– 100 x Novo-pen 4mm needles
– 2 x spare Novo-rapid insulin cartridges, kept in a Frio wallet

For treating hypos (hypoglycaemic attacks)
– 2 x Dextro Energy packs – these are easily available in India under brand names like Glucoburst
we’ll also have other foods to hand at all times
– 1 x Glucogel, for treatment of a bad hypo*.
– 1 x Glucagon, for treatment of an extremely bad hypo*, to be kept in a Frio wallet
* luckily we’ve not yet had to use any of this

For anything else
– 25 x Ketostix, for testing for Ketosis

Post trip analysis of the kit

What we wouldn’t take next time Nothing! We didn’t need to use the Ketostix, the Glucogel or the Glucagon (thank God!) but you can’t leave these at home.
What would we take more of? Dextro tablets. According to my research prior to the trip dextrose tablets are available in India but we looked in Delhi, Aurangabad and Hyderabad and didn’t find any; we asked at pharmacies and couldn’t find any. We ran out – see next ‘Running out of dextrose tablets’.

The almost serious bag loss

Having packed everything in two bags we felt safe and confident that we’d never be without the necessary supplies, even if we lost a bag. That was until we lost them, BOTH.
At the hotel in Orchha we put all of our rucksacks – bigs ones first – into the autorickshaw. Jane and I climbed in first and rested the diabetes-supply-filled-daysacks on top of the luggage, just behind our heads. The kids got in and the driver drove away slowly as it was raining and the road was full of potholes and bumps.
He got a call on his mobile and unbelievably (for autorickshawwallahs) stopped.
Then two guys pulled up on their motorbikes, shouting at the driver in Hindi, although they didn’t seem angry.
Then we saw the bags, all dirty and wet. The guys had spotted them fall out, which happened as there was no fixed back to the autorickshaw, just a rain cover. The guys wanted no money and wouldn’t take what I offered. That’s what people in India are like, they’re just happy to help (mostly).

Running out of dextrose tablets

In the first couple of weeks Amy had quite a few hypos, caused because she was injecting before she ate and then deciding she didn’t like it so much. At this point we weren’t carb counting and she was taking a regular amount depending on the size of the meal. After a week or so we realised what was happening and started doing the injections afterwards.
We were running out of Dextrose tablets and we looked everywhere we could to find some, when we weren’t sightseeing. It didn’t seem like a big thing as we were going to the bigger cities of Aurangabad and Hyderabad and would surely find supplies there. We didn’t.
In Hyderabad I started getting nervous as we were soon boarding a train to Hampi (station:Hospet) and that place is really out in the middle of nowhere. I didn’t have much hope of finding any in Hampi.
We went to a pharmacy and then another and they could offer us was powder, the type used by bodybuilders, in huge containers. We didn’t buy anything.
It’s worth pointing out that in India there’s so many possible alternatives, so many things are sweets. A good example is Barfi, a sweet mostly made from milk…and sugar. It contains on average 17g of carbohydrate per piece, keeps for ages and is available absolutely everywhere.
At the time though we fixated on the need for dextrose tablets, rather than the bigger picture of needing emergency simple carbs.
I emailed our DSN in Royal Hampshire County Hospital in Winchester and got back a reply almost instantly saying “don’t panic, just get hold of some sugar cubes at a cafe or shop and use 2 cubes for any hypo” (followed by some more complex carbs of course). It was so nice to have someone tell us what to do and break our fixation.
We ran totally out of dextrose at our hotel in Hospet and explained to the waiter who just said “take these cubes, all of them”. We had enough cubes for several hypos and every now and then we did same thing and got a stash of more cubes.
We never did find any dextrose tablets.
UPDATE: My friend Gretchen, an insulin dependent diabetic, is currently on her travels and has found it impossible to find dextrose/glucose tablets too.
Next up – cooling insulin with Frio wallets

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

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

30th December 2010, just after lunch:

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

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

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

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

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

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

I hope I never do it again.