A while ago the lovely people from Solent diabetes unit did an event for the public to find out their A1C – they used A1CNow kit. I had been aware of it for some time but the fact clinicians were using it – they probably had little other choice given the event’s location – I decided to buy some myself, for occasional home checking.
Here’s a video on how to use on, including my result which was a fair bit higher than last time:
If you don’t know what a xDrip device is take a look at this page.
Since the release of my first comment about xDrip on Sunday morning my Facebook and Twitter notifications have gone crazy: ‘like’s everywhere, comments everywhere, questions everywhere. At stages I’ve been overwhelmed with my phone buzzing with notifications ten to the dozen and me not getting the time to answer the questions. This just goes to prove the level of interest in a set up like this.
By far the biggest questions I have been asked are:
1. can I really build this myself as I’ve never soldered before?
2. what components do I need?
3. where can I buy these components?
The answer to 1 is easy: Yes, you probably can, I had never soldered anything electrical before starting this project, in fact I had to buy a soldering iron/kit just for this.
The rest of this blog should answer questions 2 and 3.
Components you’ll need to buy, borrow or steal
(Okay, don’t steal, that’s not good.)
Thank you to Johan Lorant from the USA for information about the components he bought.
UPDATE WARNING
Bluetooth Low Energy 4.0 BLE Tranceiver HM-10 Module
The heart of the xDrip device is the WIXEL chip.
AdaFruit LiPo (Lithium-ion Polymer battery and MicroUSB charger.
You’ll need some wires to link it all together. I bought these and cut them in half as I’m going to build another xDrip.
Having never soldered before I was in need of a few things, all of which I found in this kit. Note that everything works well apart from the solder, buy some good stuff elsewhere.
I wouldn’t be without my multimeter when dealing with electrical stuff but you don’t actually need one. I used one for the first xDrip I built but not for the 2nd or 3rd which I use as spares in demos.
With Abbott’s Freestyle Libre launch at the EASD conference on Monday the excitement in the diabetes online community is hotting up, with some getting their hands on the device already.
(If you’ve not heard of Libre before perhaps read this: Abbott Freestyle Libre Flash Glucose Monitoring: no more fingerpricks?.)
The full facts about the product are not yet out but there’s quite a lot of rumours going around and the following seems to pop up all over the place:
– Cost, the initial starter kit will be £135 and will include two sensors which cost £48 each thereafter.
– Sensors, last for two weeks, no more, no less.
– NHS will initially not be funding Libre although there are funded trials going on and may well be special cases for individuals.
– Libre will only be available to 18 year olds and over, the kids licence will hopefully come along soon (I’ve heard that before).
Here’s a video from Abbott about getting started with a Libre, including inserting a new sensor which seems very easy:
httpv://www.youtube.com/watch?v=8cK046ORpog
We’ve started using CGM (continuous glucose monitoring) alongside Amy’s Animas Vibe pump to help with hypos and hypers. The CGM alerts whenever Amy goes high or low, Libre won’t do that.
We use CGM to get data to recognise patterns and make adjustments to Amy’s insulin pump’s basal profile. Libre will do that.
We experiment with different combo/wave boluses for different foods and view the results on CGM to see how to do it better the next time. Libre will do that.
In a hypo situation it’s crucial to know whether the most recent treatment of glucose is working and levels are coming up, CGM doesn’t react fast enough so isn’t used for this only blood checks will do. This will be interesting how Libre compares to Dexcom as Dexcom samples every 5 minutes and has about a 5 minute lag, so you could be up to 10 minutes out. Libre though samples every minute but what is it’s lag? If it’s close to Dexcom then it might be up to 6 minutes out, but if it’s closer to older CGMs it could be up to 16 minutes out.
Without seeing results of trials this product gives me hope for Amy’s future, hope that technology is moving so fast at the moment that even without a cure her life will be more bearable on a day-to-day basis, more hope that this will lead to lower HbA1c’s (without hypos/hypers) and no complications.
Day-to-day it might be able to relieve the soreness of her fingers.
During the night it will mean we can check her levels more easily when she’s asleep. She has a habit of lying on her pump which means I can’t get to it without waking her up.
I hope that this device becomes a mainstream alternative to fingerstick tests and NICE/NHS will fund it on the basis of a lot less test strips being used. I would also be happy to co-fund it like others in my clinic do for the Omnipod insulin pump.
The information about Abbott’s Flash Glucose Monitoring seems to be getting stronger by the week with little snippets being released every now and then.
In summary
From what I’ve read and watched (and hopefully understood correctly) I take it that:
One of the most recent bits of information I’ve come across featured a video about testing whilst in a fast-paced job.
So no more fingerpricks and no more sore fingers?
No more wondering what happened to blood glucose levels whilst asleep?
Parents being able to check their kid’s glucose levels during the night without waking them?
Adults being able to basal test during the night without having to wake themselves up and potentially altering the result?
Basal injections or basal profiles on pumps being able to be finer tuned.
In a word, no, well not as such.
No, it won’t give any alarms about low or high glucose levels, or rapidly changing levels.
No, it won’t be able to do anything like the Medtronic pump’s Low Glucose Suspend mode which shuts off delivery of any insulin if their CGM tells it the glucose level is below a minimum level.
However…
As a family which has only used CGM for almost a month it would be good for us as the key thing we’ve been doing with CGM is to get the overnight basal profile correct for my daughter’s insulin pump. We’ve also been using it to see how different foods change glucose levels.
For these two things the Flash product would be great.
With the sheer volume of information coming direct from Abbott themselves it’s hard to see that this could be pie in the sky. I’ve heard that Abbott expects Flash Glucose Monitoring to be at the core of their business within a few years and they’re rumoured to have told the stock market this, so it sounds like it’s a make or break thing for them.
There will hopefully be a lot more information coming in the next couple of months leading up to Abbott’s symposium at 10am on 15th September at EASD2014 (European Association for the Study of Diabetes) in Vienna.
If you’re not one of the lucky ones whose able to be there you can register to view it online, like I have.
Hopefully they’ll announce the date Flash Glucose Monitoring will become available and how much it will cost.
Hopefully it’ll be at a cost acceptable to the NHS – but I doubt it.
Maybe the NHS would partially fund it, with the people with diabetes (or their parents) funding the remainder. I’d be interested in doing this although I’m not sure how much I’d be willing to pay.
It’s fair to say I’m pretty excited about this.
Amy got her insulin pump on the 20th June and the very next day we were back in the hospital for her quarterly clinic appointment, which included the standard glycated haemaglobin check, or HbA1c check to you and me. Tomorrow is her next clinic appointment and the much awaited HbA1c check, which will reflect on her last three months.
There’s a standard joke within the diabetic online community (#DOC) that the HbA1c is a flawed test and that its result is pretty meaningless.
It’s possible to achieve a good HbA1c result when your blood sugars have been constantly low which in turn drastically affects your quality of life. Amy reports that hypos can take a long time to recover from and can ruin a many of the hours that follow. It’s pretty much the same thing for high blood glucose readings.
So it’s much better for quality of life to have blood glucose levels that don’t wildly fluctuate.
The HbA1c check doesn’t take account for fluctuations of BGs it merely tells you your average meaning that the same result can be achieved by two people, one who’s had many hypos and hypers and another whose levels haven’t fluctuated much and stayed within the desired range of 4-8mmol.
All this is best summed up by Dave Sowerby’s excellent article – HbA1c – A Good Measure?.
So, within the #DOC if anyone gets a ‘bad’ HbA1c many of us say ‘well, don’t worry, it’s a flawed test’.
HbA1c – who cares about flaws?
The other standard joke within the #DOC is that if anyone gets a ‘good’ result then we’re all so pleased for them, praising them on their good efforts.
If their result is 6.0 to 7.0 many say ‘wow, that’s brilliant, wish we could get close to that’ and ‘tell me how you do it’.
A result any lower than 6.0 often results in jokes being made…’you don’t really have diabetes do you!?’.
Rarely does anyone mention or ask about BG fluctuation, we’re just happy for those who have done well.
When Amy was first diagnosed her HbA1c’s hovered around the 7.3-7.5 mark but recently they’ve been a lot higher.
We can explain this away as her having generally higher levels due to fears of hypos in the night, probably after reading articles in the media about people not waking up due to ‘dead in bed syndrome‘.
On 21st June 2013, at Amy’s last clinic her HbA1c was 8.2.
In March 2013 it was 8.0.
In December 2012 it was 8.3.
We ultimately want Amy’s blood levels to be within range (4-8mmol) all the time with very little fluctuation, all because we went to minimise the chances of her getting complications later in life. So regardless of flawed test or not most people would prefer to see a lower HbA1c.
For me, I want to know that the insulin pump has made a difference. It’s already helping to minimise fluctuating BG levels and it’s helped loads with Amy’s quality of life and outlook on diabetes so (in theory) even if the HbA1c comes out the same or even slightly higher than before then we shouldn’t be worried.
I’d like a lower result too for the hospital’s sake, to know yet again that the pump has made a difference.
I don’t know, really, I don’t.
It might go down: in the first 3 weeks we were sorting out Amy’s basal profile on the pump and she was having a lot of hypos, but that’s been mainly solved now and hypos are a lot fewer and far between.
It might go up: Amy’s pump has meant that she’s been snacking a lot, something she never did when injection as she would never take another injection, instead she’d avoid the snack. Amy knows that her snacking needs to reduce but at the moment it’s a rebound thing.
It might go down: Before the pump we never let Amy go to bed with a BG level any lower than the top of the range, meaning that she often went to bed at 10mmol. On the pump a 10mmol would be corrected at bed time, such is our confidence in the pump. In theory this means she runs a lot lower through the night, for many hours.
It might go up: she’s been on school holidays for the last 6 weeks and has been getting up quite late, often waking at 10mmol – which funnily seems really high nowadays.
So…I just can’t guess what the result will be.
…watching this space…
For the first time in years both my kids were in the same school this year and we’d promised that we’d take them to Alton Towers on the first summer-ish teacher training day. So way back in November I booked up a hotel nearby for a couple of nights. I say hotel, it’s a Travelodge, which many of you will baulk at but it was clean, had a bed as was £20 per night for a family of four.
In December or January some #DOC (diabetes online community) people on Twitter were talking about meeting up somewhere like Alton Towers, perfect for me, as long as they wanted to meet up on the 28th or 29th June. I mentioned that I would already be there and a few people said they’d try to come too, with Derek and his family (Clare and Chloe) committing themselves and booking up the same hotel for the same two nights.
Many people started saying they would come and I got a little worried about how doing all the rollercoasters would work, but eventually our tweetup group dwindled to what became a perfect number for hanging out together. I would have preferred to have met more people but it could have meant we got to do a lot less rides.
In the end my family and Derek’s family were there for two days and we were joined by Philippa/James for the whole of Saturday, and met Vanessa-Louise and partner briefly on Saturday too. The next article talks about 29th June 2013 when Philippa and Vanessa-Louise were there too.
Both Derek and I had circa 3 hour drives to get to Alton Towers but we arrived within minutes of each other.
Derek’s daughter Chloe has Type 1 Diabetes as does my daughter Amy and they’d been texting each other during the journeys so they were very pleased to see each other again. Chloe’s cousins Charlotte and Martin had come along too to enjoy Alton Towers with us.
Once there we headed straight to Guest Services to arrange the ‘special access’ wristbands that Derek’s daughter Chloe and my daughter Amy were eligible for, both having type 1 diabetes. Here’s more information about Alton Towers’s special access wristbands and fast tracking rides.
The Smiler is Alton Towers’s newest and biggest ride, with a world-first 14 inversions. It’s mad, it’s really made. Here’s a video of it.
We entered the disabled queue, which seemed odd, but as by that time the main queue was 120 minutes long we were happy to gain quick access to the ride, “just keep your head down, don’t look them in the eyes” 🙂
My family went first, Derek’s behind and after only 10 minutes or so we were waiting to board The Smiler.
Strictly speaking we were meant to be in the back row on the 4 row coaster as that’s where people with ‘special access’ wristbands are meant to sit, but I didn’t know it, so pleaded with the attendant to let us on the front. He agreed.
So our first ride of the day was Alton Towers’s biggest ride and we were at the front.
Wow.
OMG.
Awesome.
The special wristband enabled us to do so many rides: before lunch we’d managed to do The Smiler, Oblivion, Submission, Rita (twice) and some smaller rides, all within two hours which was the length of the normal queue for The Smiler. Amy needed to disconnect her pump for many of the rides, which is advised due to the G forces on the big rides and ridiculously strong magnets employed by them.
Lunchtime came and we waited with baited breath to see what Amy’s blood glucose level would: 6.5 phew!
Talking about BG levels Amy’s were good for the whole day: 5.0, 6.5, 7.2, 3.6, 13.7, 7.2. Only the 13.7 was massively out of range and that was because she’d had too big a hypo-cure 30 minutes before, easily done. I’d call those figures a win.
After lunch we rode, Thirteen, Air (twice), Nemesis, Blade and finally the Congo River Rapids.
I think there was no doubt that The Smiler and Air were the two best loved rides for the group.
It was interesting for me as I’d done Air four years ago, paying to fast-pass it but still waiting 45 minutes to ride it at the front; I didn’t think much of it, but today I loved it. Top tip: it is not worth riding Air at the front as you’re looking down most of the time.
But that time we were already soaked from the light rain, it was a good job considering what happened next on the Congo River Rapids ride; take a look.
httpv://www.youtube.com/watch?v=Xf-y81Gz1oU
BG readings graph from 21st JuneAmy would normally test her blood sugars a minimum of four times a day, often 6 and sometimes 10. For the first 24 hours of having a pump she did a minimum of 12, one every two hours.
For those of you who don’t have diabetes – or friends with – let me just say that: yes, testing hurts a bit; no, it doesn’t get easier the more you do; no, you don’t get ‘used to it’; yes, it makes your fingers sore.
Accumulating masses of data is a by product of having type 1 diabetes. It’s hard to ignore the numbers when you’ve been testing your blood sugar, counting the carbohydrates you’re consuming, giving doses of insulin, giving correction doses of insulin, feeding yourself glucose to raise your blood sugar.
Analysing this data can help you and your DSN realise what slight changes need to be made to help achieve seemingly impossible stable blood sugars between the levels of 4mmol and 8mmol.
Below is a graph of Amy’s blood glucose from before the pump.
Whilst it look pretty darn complicated the key things to notice are:
– the the yellow bar shows our meters ideals level of between 5mmol and 8mmol. (Amy doesn’t like hypos hence the 5mmol rather the desired 4mmol.)
– the blue line which is an average of the readings, noting that many of the readings hit 15mmol and 20mmol.
– the average is consistently above the desired zone.
I haven’t analysed the following data and I won’t be making any changes but it’s interesting to see how quickly the pump is helping with BG control. Before she went on the pump she was constantly quite high and to be honest we did nothing about it as we new the pump was coming along soon. As Amy hated injections so much we rarely “corrected” any high blood glucose readings, this being a reason we really wanted a pump.
Here then are the graphs for the different days
Amy and her new insulin pump and her new DiabeTees iPump t-shirtSince 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.
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.
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.
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.
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.
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.
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.
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:
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
Amy and her new insulin pump and her new DiabeTees iPump t-shirtWe 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.
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.
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.
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 NHS Eatwell plate. 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.
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.
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.
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.
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.
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.
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.
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.
Amy was a bit nervous about going back to school but I wasn’t too worried as our diabetic nurse had reassured me that the office staff at Amy’s junior school were fantastic.
It was the start of the spring term and our life now seemed totally different.
On the first day I couldn’t take her to school although I desperately wanted to, as I work in a preschool, my manager was off sick and the deputy manager was very unsympathetic. I remember clearly the deputy dismissing my worries as if Amy had a cold. She was annoyed that I had requested to leave work for half an hour at lunchtime to give Amy her injection and said “Oh well there’s lots of children there with diabetes, why can’t the office staff just do it.” I was angry and hurt that someone could be so unfeeling. My baby wanted and needed me there as she was frightened and anxious about injecting in a strange place. Kev worked from home and did Amy’s first injection in school as luckily he has a very understanding manager and can work from home if necessary.
On the second day I wasn’t working and arranged to meet our diabetes nurse at reception. I remember her explaining everything to the ‘office angels’ although diabetes wasn’t something new to them. One of the admin officers, who I had always been a bit wary of, was so calm and reassuring, she was used to treating diabetics as there were two others in the school already. Amy seemed reassured as she was shown where we could do her injection at lunchtime and she had her own tray to keep all her hypo stuff in. She seemed to be coping quite well and she almost liked the celebrity status: being allowed to jump the queue at lunch; leaving lessons 5 minutes early before lunch; being escorted by a friend for lunch; being allowed to take her toy cat, “Little B”, to every lesson.
I remember by the end of the fourth day that I was overwrought; angry because of the unbelievably dismissive attitude of my deputy manager and exhausted as I had to be strong for Amy. The deputy had made a snide comment as I left at lunchtime and when I got to school the office staff were so nice to me that I just burst into floods of tears. The admin officer gave me a big hug which made me feel loads better and she reassured me that I was doing fine and Amy was coping very well as she had a lovely family supporting her. This is why I will always think of them as ‘the office angels’.
Having talked to other mums of diabetic kids who have told me horror stories about their school’s provision, I realise how lucky Amy was to have developed diabetes whilst at Fair Oak Junior School. The staff at the school helped Amy to cope with a life-changing condition, making sure she was okay, helping with her injections, phoning me if Amy had hypos.
I have nothing but admiration and gratitude for them but especially my ‘office angels’. I will never forget their kindness.
I was in two minds about going back to school: I wanted to see my friends as I hadn’t seen them for ages but I had several concerns about dealing with diabetes at school when my parents weren’t around.
When I went into class on that first day I was escorted by one of the office ladies who told my teacher about diabetes. I didn’t think it was that serious. That morning we did an activity where you had to write down your New Year’s resolutions and then if you wanted to you could read them out. As I didn’t care if everyone knew or not, I wrote and said “to do all my injections properly”. Now, I wish I hadn’t because that meant I had to tell everyone in my class I had diabetes. I didn’t care about everyone knowing, not then anyway, but now sometimes I wish that not everyone knew as I don’t want them to think of me as a diabetic first and a child afterwards. Daddy says people see me for my personality first, not diabetes, but I’m not sure.
I wanted Mummy or Daddy to do all my midday injections with me but it was hard as they both had to work. My mum works at a pre-school quite close to my school therefore it was always her that had to come in for an hour during lunch. I was very happy that she could come in, so you can imagine how upset I was when she told me that she couldn’t do it on Thursdays. For the first couple of Thursdays Daddy come in to do the injections but he couldn’t do it forever as his work was 30 minutes drive away. I said to Mummy that she would keep saying the same for the other days until eventually she wouldn’t come in at all. And I was right. I started doing the injections with the office ladies, but I wanted my Mum. I felt like I had to control diabetes all by myself. I was scared.
Luckily for me I have a lovely set of friends and that meant that this disease would not affect our friendship. All my friends volunteered to go to lunch early with me (out of kindness, not just because they wanted to go to lunch early) but I could only pick one, so they took it in turns. I am so glad my friends stayed by my side, it didn’t even occur to me that they might ditch me as a friend and it would have been a very big shock if they had.
I was annoyed EVERY time I did P.E. (which was a lot) as I had to go all the way to the office and do a blood glucose test. If I was alright then I would go to P.E. but if I was lower than 12 I had to eat something before. Unfortunately I didn’t always know where P.E. was, it could have been the hall, the field, the upper school playground, the lower school playground, the millenium garden or even the running track. So I would have to visit every single one of those places and sometimes by the time I had almost visited them all, the class would have finished P.E. and be back in the classroom getting changed!
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.
Diagnosed 29th December 2010
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.
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.
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.
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.
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.
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An HbA1c checking machine