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Basingstoke Type 1 Diabetes Awareness Evening 11/03/16

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The start of a whirlwind long weekend of diabetes events was an event organised by our clinic which jointly covers the Royal Hampshire County Hospital and Basingstoke Hospital, and their surrounding areas.

There was one last year and I found it really good, an opportunity to speak with our consultant outside of clinic walls, to mingle with other parents and grill the reps.

Truth be told I was rather nervous about attending this event.

The last time we saw the team was this fateful day back in January and my anger at the apparent complete disregard for our wishes almost saw us transfer elsewhere. So this would be the first time we met since that clinic. How would it go, would I lose it or could we still be ‘friends’?

I decided to put that last clinic down as a bad job, a mistake, a misunderstanding and walked into the room as if that clinic had never happened. And I’m so glad I did. Things appear to be back to normal although we’ll not know for sure until the next clinic.

These events are great for networking and we’d agreed to meet several people there; Steve and Becky; Matt, Sonal and their daughter who adores Amy. I bumped into Claire who runs the Basingstoke PWD group and I suddenly remembered I’m meant to be talking about Social Media and Nightscout there soon so I went over to discuss it. (*writes date in diary before he forgets*). Amy had made a little gift for Matt’s daughter who was thrilled.

The room filled with families and many of us left to listening to the Tech talk. Matt and I haad hoped to present Nightscout as part of this talk but its lack of clinical trials meant we were denied. Shame really as I think the parents needed to hear it, it would have been far more appropriate than talking about Smart Insulin etc.. But then again, there seemed to be so many families who nothing of this stuff. One person even asked if there was any truth that Reiki could help, something I consider as helpful to Type 1 as slapping, although hopefully less harmful.

Matt and I had joked that I’d ask a question after the session, that question being ‘Matt, what’s your daughter’s glucose level right now?’ and looking at his Pebble he’d reply ‘x.xx mmmol/l, how about Amy’s?’ at which point I’d look at my watch. We never did, I bottled it. It could have been funny though right?

The next session was about Transition and Amy and Jane sat in for that. I was gasping for a drink so headed out only to bump into fellow DiabetesDad and cyclist Gavin. Gavin asked if I could chat with him about Nightscout for 640g and I creased up as Matt (the 640g Nightscout solution provider) was a metre away. “Matt, meet Gavin” I mentally said Sorry to Sonal for given her husband even more support to do, although I’m pretty sure Gavin will figure it all out.

I never ventured back into the Transition talk and it’s probabably a good thing as Jane told me that apparently at the first transition clinic they see the kid first and then the parents and child together afterwards. So why on earth did they not do that with us? I just may have exploded if I’d been in there.

I had a chat to Emma, our pump rep, quizzing her on the rumours of Animas’s next pump name, release date and features. She’s good though and gave nothing away, thinking obviously that no-one in the community knows about the 2017 release date of the pump which like Medtronic’s 670g will feature a hypo and hyper minimiser. I already knew that this new pump will use Dexcom G5 as its base, we’d prefer G4 of course with its 4x longer lasting transmitter, but G5 will be awesome in this pump.

It had been a great night, lots of interactivity, lots of chats, lots of meetups and more importantly I’d not glared at the team.

Helping out our future Pharmacists

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VariousPills

A few months ago a local parent of a child with Type 1 posted a request for help from Portsmouth University’s Pharmacy department for people to be interviewed by their students. It didn’t sound like my cup of tea to start with but then it dawned on me: I’d get two hours to talk about life with Diabetes to people who actually wanted to listen. Oh yeah, hello, I’m in.

As I walked through the corridors of the University on Thursday afternoon I wondered who was more nervous, me or the students. It turned out it was the students, but only at the start as they got into the flow after question 1 and asked some pretty good questions to further their learning.

Working in pairs one student interviewed me whilst another operated the videoing and took notes, lots and lots of notes. They use the videos to watch their own performance so that they can improve their interviewing technique and learn how to phrase questions better. To be honest though they didn’t need to worry about asking me open questions to get me to open up.

Bearing in mind that they were only year 1 students who had only been at Uni for a few months they all amazed me with their level of understanding of everything I said. In the first couple of sessions (of the 7 or 8 that I did) I threw out words like ‘insulin’, ‘HbA1c’, ‘hypo’ and ‘postprandial’ whilst tentatively saying other things like ‘CGM’, ‘diabetic ketoacidosis’ and ‘diabulimia’. But they knew about everything I said and listened without requiring further explanation; I guessed they had been prepping hard beforehand.

After 2.5 hours of being interviewed I was pleased on many levels: I got to talk to people who were really interested; I got to answer so many great questions; I helped the students realise the reality of living with a child with Type 1; I got through talking about Amy’s diagnosis without feeling too sad.

There was one moment which made me smile, through the sheer innocence of the question:
pharmacy student question

I’m so glad I took part in this event as I found it worthwhile for me and helping out our future pharmacists can only be a good thing…unless of course I said anything controversial…but I wouldn’t do that, would I? *ahem*

“Bringing up Children with Diabetes” #GBDOC Tweetchat – Questions

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gbdocI’ve taken part in many of the weekly (Wednesday night at 9pm) #GBDOC tweet chats since they started a couple of years ago, I enjoy them and generally get a lot out of them. A couple of weeks ago I got a message from Paul (@t1hba1c) who hosts the #GBDOC tweetchats who asked whether I’d like to host a tweetchat about bring up children with diabetes. I was initially reluctant: why would anyone want to listen to or answer my questions; there’s many more parents who with their eloquence could host a great tweetchat.
After a couple of messages between Paul and me I decided to do it and then proceeded to panic about what to ask. The easy solution was to ask other parents what they’d like to know so these questions are not just mine, they’re from a mixture of parents.

For the chat I’ll be using the following abbreviations:
PWD – Person With type 1 Diabetes
CWD – Child(ren) With type 1 Diabetes
PofCWD – Parent(s) of a CWD
Dx – diagnosis of type 1 diabetes
CGM – Continuous Glucose Monitoring, such as the Dexcom G4 Amy uses, gives a constant, slightly delayed reading of a PWD/CWD’s glucose level.
CGM-in-the-Cloud/Nightscout – a system developed by PofCWD which allows parents to view their kid’s current glucose level whether they are, many use a Pebble watch or iPad to view their kid’s CGM data. More info here.

First a couple of questions about work & relationships, not at the same time mind…unless you’re working late 😉

Q1a Employment: has having diabetes affected your employment chances? Did you change your career path/dream because of it?
One of the first things parents are often told at diagnosis is that it won’t affect their child’s career unless they want to join the Armed Forces. As time goes on you hear that people haven’t been able to become pilots, or paramedics and the list seems to go on. Some kids already have thoughts of joining the Army etc., then they’re diagnosed and those dreams stop. Did you dreams stop?

Q1b: Are there any ‘good’ or ‘bad’ jobs? (Thinking along the lines of jobs where it’s really hard to test or take a break)
I’d never dream of steering Amy towards a certain career path because she has Type 1 Diabetes, she needs to choose her own path, but it seems to me that there must be certain jobs where testing glucose and taking the odd break for treatment is a lot easier than others.

Next up, one of the worries for parents is about their kids having a happy family life.

Q2 Relationships: has having diabetes been a factor in finding/losing a partner? Has it caused issues in your relationships?
On many of the parents’ Facebook groups many talk about how their marriage fell apart after their child was diagnosed, blaming the stress from prising apart already existing cracks. Some worry that their child might find it difficult finding their ideal partner, although I believe the truth will out and Amy will have no trouble finding that decent guy (or girl of course).

Moving on to positivity, about kids attitudes and fear and confidence.

Q3 Attitude: do parents instil confidence or fear in their CWDs with things like overnight checking, CGM, CGM-in-the-cloud?
I often wonder whether my own personal paranoia and control-freakishness is instilling fear in my daughter’s mind rather than what I really want – for her to be independent. My interest in her using CGM has led to us all to expect it to be there every day and I can’t help but wonder if this is sending out the right message. Back in the day parents didn’t have these options and all the PWD I know seem to have grown up pretty well and turned into to great adults.

Q4 Positive clinics: How should parents go about teaching our kids to question their HCP’s? What are the important points?
Our Consultant is great, she rarely talks to us parents but instead talks straight to Amy and all about the soft stuff too, no focus on HbA1c as such. Amy though rarely thinks of any questions for her sessions as she’s happy with her care. I want her to be able to question the HCPs, learn from them, teach them so does anyone have any tips of how to achieve this?

The next question is whether or not it’s right to restrict things due to worries about the future.

Q5 Care focus: should our focus be the current or the future? What do you wish your parents did or didn’t do? Any wind ups?
The current or the future: I seem to have two choices, either make life easier for Amy now and not worry too much about her day-to-day levels OR be very involved in Amy’s day-to-day management helping her with basal/bolus management & set changes etc.. I choose the latter which I know can wind Amy up, but I do this to help her future as much as I can, hoping to minimise complications as much as possible. But which approach is right?
Am I right to steer her away from, or make her wait for, a carb loaded snack when her blood glucose is already quite high? Should I let her eat anything her friends eat?
Or am I right to try and teach her to minimise the food spikes going too high?
I guess many PWDs either wished their parents did less or more during their childhood. Any experiences you’d like to share?

If we get time I’ll ask this one.
Q6 Letting go: what’s the best way/age/time to hand over care completely? Do PofCWD ever fully let go? Did yours?
I tell myself that I’m learning all I can about Type 1 to help Amy’s future and to stop Amy having to learn all this, that I’ll educate her bit by bit and at some point let go completely. Honestly, I’m not sure I’ll be able to do that.
Have your parents ever let go fully? Do they still ask what your glucose level is occasionally?

Many thanks to @theGBDOC for the opportunity to host this tweetchat and to Rachel and Louise for helping with creating some questions.

Amy’s Chat Show at the National Paediatric Diabetes Team Meeting

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Lilly Diabetes ConferenceBack in April Dr Kar (@parthaskar) from the neighbouring QA hospital asked if Amy would be up for helping him out at a conference he was going to, the National Paediatric Diabetes Team Meeting hosted by Lilly in Birmingham. I guessed she wouldn’t, it’s not her thing, but I asked and she said ‘Yes’, her thoughts of helping Partha outweighing her fear of public speaking.

Part of the excitement was getting chauffeured to Birmingham in a shiny Mercedes but he was due at 11:30am and should have been here 15 minutes ago. Our house is notoriously hard to find and it turns out he didn’t have my mobile number. Finally I found him by walking around the area and we were off. I quick call to Nicki at Lilly and we found out Amy was on at 14:45, our ETA 14:30, perfect. That was until the roadblock north of Oxford which saw us divert towards London. ETA 14:50, not so perfect. Nicki said don’t worry though.

Rushing into the hotel Nicki met us and Amy got miked up, alongside 19 year old Rebecca who goes to QA, but where was Partha: stuck at Oxford. The chair, Dr Fiona Campbell, padded out for a bit but it was clear Partha wasn’t going to get here in time and the show must go on. Easy for adults to adapt to but not so easy for a 13 year old with a fear of public speaking. Fiona took control and Amy and Rebecca took to the stage.

The idea of the slot was to be a chat show, with Partha calmly asking Amy and Rebecca questions about their care, what they like, what they don’t and what would be the ideal service for them. Amy knew these questions and we discussed in the car how she’d like to respond, trying to make the experience as easy for her as possible. Trouble is Fiona didn’t know these questions, nor the interviewees, but I must say that she winged it incredibly well.

Amy looked nervous on the sofa sat next to Rebecca but then I saw she was also sat next to Alex Silverstein, someone whom I follow on Twitter and we’re friends on Facebook but our paths had never yet crossed. I felt better, Alex would take care of her I thought, although of course he didn’t know it was Amy sat next to him.

With the first question asked Rebecca gave a great long answer, before Fiona asked Amy who then got a bit tongue tied. More and more questions asked and Amy opened up giving great answers with the information she knew about. She was asked about talking to the GP about diabetes and said she never had and wouldn’t as she’d talk to her diabetes team. Fiona asked why Amy wouldn’t think about going to the GP and Amy answered exactly the same way I would: if it’s diabetes related we’ll go to the people who are the specialists.

Questions were asked about Skype consultations, preferred types of wards for any hospital admissions (general young persons’ ward or specialist diabetes) and whether they’d prefer letters being addressed to them or their parents. Letters? No thanks, these are young people, they want emails, or (as suggested by Fiona) text messages. They were asked if they ever saw a post-clinic letter, they hadn’t. I felt like stepping in and saying that yes we get a letter, two months after clinic, a letter which informs us of our insulin-pump-wearing child’s basal-bolus units and ratios but nothing about her pump’s basal profile or insulin:carb ratios. That letter goes straight in the bin.

With the show over Amy’s first DSN Debbie came over to see us. She had no clue we’d be there and took a while to recognise it was Amy on stage, but she was so proud, remembering that 10 year old who she’d helped through her first injection. I was bowled over to see Debbie again and similarly to meet Alex after all these years. I shared text messages with DSN Sarah who works in Southampton but couldn’t see where she was in the room. One of our DSNs was at the conference but we never managed to see each other. But that wasn’t too much of a surprise in a room of 300 or so.

Post chat show and we shared some lunch with Partha – who arrived just as the session ended – and we discussed the event, how it went, questions that were asked. It was nice to talk about emerging technologies too, like the Abbott Flash Monitoring.

In the car Amy seemed disappointed, feeling she hadn’t done so well, remember getting tongue-tied on the first question, but she had done well and later I showed her some comments from people I’d never met before who saw this tweet:LillyConfTweet1TweetFrankie1

TweetHannah

If you’re wondering whether the chat show format worked…

TweetHannah2

More importantly it was seen as a success in two ways. Firstly Amy went in at 8.7mmol, an hour later she was 8.7mmol (although then she ate evil pizza!). Secondly, this…

TweetPartha

Lilly Diabetes Conference

TrialNet – Do I really want to know if I may get Type 1 Diabetes?

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TrialNet logo

Today, Emilia, myself and a friend are taking our first steps into clinical trials called TrialNet to see if it’s likely that we may develop Type 1 Diabetes soon.
I think it’s fair to say that we’re all slightly nervous.

What it TrialNet?

TrialNet is a global research project into how Type 1 Diabetes occurs. There are centres in many countries, with Bristol being the main one in the UK but with others joining in including Bournemouth where we’re going today. I believe Portsmouth which is also local to us will be joining in soon.
I first found out about TrialNet via the #DOC (diabetes online community) but it was only following a talk by Dr Kathleen Gillispie at the JDRF Discovery Day in Bristol in April that I started looking into it properly.

Do I really want to know?

Once I started looking at TrialNet the question arose of whether I really wanted to know the answer it might provide.
Quite simply the answer is ‘yes’, although it’s taken me months of questioning myself to make sure I’m sure about this.
The result could go either way but it’s more likely Emilia and I will get the all clear and that would save a few years of worrying. If it turns out either of us are positive for the antibodies then we can proceed on to Stage 2 of the trial, if we choose. It’s important to note that we can opt out at any time.
Initially I signed up, hoping that Emilia might choose to but not really expecting that to happen. I’m pleased that she’s decided to come too as I’m sure she’s been silently worrying about her chances of getting Type 1.

The ‘Natural History Study’ trial

We’re taking part in the Natural History Study where anyone between 5-45 (yes I am young enough, just) with a parent, sibling or child can take part. It’s also open people aged 5-20 who have a cousin, aunt, niece, nephew or grandchild. Quite how a twenty year old can end up with a grandchild with Type 1 I can’t quite work out but presumably if a grandparent has Type 1 and the parents are too old to take part any grandchild can.
We’re visiting the Bournemouth Diabetes and Endocrine Centre today as it’s only 45 minutes drive away but if you don’t have a local centre then you can send your blood sample via post; contact your nearest TrialNet centre to discuss the options.

Helping each other

I know very little about clinical trials but I’ve always imagined that they’re all about the research and little about the person taking part. With TrialNet this definitely isn’t the case as all three of us will ultimately find out whether we’re likely to develop Type 1 Diabetes soon or not.
More importantly we’re helping the trial and I feel this is vitally important to help the scientists learn more and ultimately find a cure or preventative medicine.

Want to find out more about TrialNet

If you want to find out more about TrialNet visit the UK web site here: http://www.bris.ac.uk/trialnet-uk/index.html.

Diabetes has improved our life. What? Really?

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diabetes journeyMy view of our diabetes journey

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

Your journey since diagnosis

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

Urrgghh! Drawing!

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

Diabetes improves our life. What? Really?

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

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

29th Dec 2010
1
2
3
4
5
6
7
8
9
10
11
12

diabetes journey chart

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

Lunchtime chat: could this journey really be accurate?

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

Go on, have a go yourself

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

The Portsmouth “SweetMeet”: A privileged invite

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Dr Iain Cranston gives a talkDr Iain Cranston let’s us know about future improvements

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 – official pump demo – Animas Vibe

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Animas Vibe pumpsAnimas Vibe pumps

Rung five – official pump demo – Animas Vibe

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

Like a blind date

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

How to start a demo properly

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

A pump of many colours

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

On to the demo

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

Combo-bolusing

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

Basals and Temporary Basals

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

Infusion set change

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

End of a great demo

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

Getting an insulin pump – pump demo – Animas Vibe

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Animas Vibe pumpsAnimas Vibe pumps

Rung five – (un)official pump demo – Animas Vibe

We went to yesterday’s JDRF Discovery Day in Bristol not just to listen to their talks but also to meet up with lots of people from the online Twitter community for diabetes, affectionately know as the #DOC. One of them, Annie, is a huge advocate for Animas pumps in general and especially of their latest offering the ‘Vibe’ which her daughter has been using for a few months.

*Stop Press: Because Annie is such an advocate of Animas, I propose they are renamed Anniemas for the rest of this article.

What’s in a name?

(If you’re a kid reading this please skip this section.)
Vibe! Vibe!? Why on earth!
This was either a very clever marketing ploy or people in Anniemas’s* Department of Pump Naming lead very sheltered lives and need to get out more.
Amy’s 15 year old sister Emilia has already told Amy she can’t have one of these pumps due to the name and even at 12 Amy knows what it means. At lunch yesterday I got a giggle out of Emilia yesterday by telling her that Paul sat opposite had a black Vibe in his pocket.
If Amy gets one of these I’m going to have to tippex out the name on front, either that or smirk every day I see it, for four years – that’s a lot of smirking.
Dear Anniemas*, for the record please do not call your next pump The Rabbit.

First, the Anniemas* 2020

Annie’s daughter has just recently got the Anniemas Vibe pump and when you change pumps you get to keep your old one, which in this case was the Anniemas* 2020.
The 2020 is very similar to the Vibe, a little smaller in length due to the extra bits the Vibe needs to incorporate CGM (continuous glucose monitoring).
Armed with some old insulin Annie showed me how easy it is to full the pump reservoir from a Humalog 10ml vial, although to be honest I was all fingers and thumbs as this was the first time I’d tried anything like this.
Once the reservoir was filled Annie effortlessly primed the pump quicker than I could ask ‘Annie, how do you prime the pump?…oh, you’ve done it”. 🙂

The Inset II infusion set

Animas Inset II infusion sets in multiple colours

Annie passed me one of Anniemas’s infusion sets, the Inset II, which comes in three colours, this one being white. Some people say the pink ones hurt less; I think that may be a myth.
Anniemas’s* infusion sets are self contained, everything you need to do a set change is contained in the set itself: there’s no need for you to carry any set insertion device like you do for the Accu-chek Combo.
These infusion sets fit any pump whose reservoir has a Leur lock at the top, so they can be used on Anniemas*, Roche and Medtronic pumps. I found this out from another Twitter user who used to use an Anniemas* 2020, moved to a Roche Accu-chek Combo but didn’t like their infusion sets so uses Anniemas* ones instead.
Annie talked me through preparing the set for insertion. I said “you do know I’m not going to put this on myself don’t you?”. She just smiled.
Once the set was prepared I re-iterated I didn’t want to insert it on myself – now though I wish I had – so Annie took it, pulled up her sleeve and inserted it into her upper arm. She didn’t flinch. I’ve only found out since that she’d never done this before in her arm and didn’t know whether it would hurt. She says it didn’t, I’m glad.

Bolusing and calculating carbs

Bolusing on any pump is a relatively straightforward affair and the Anniemas* is no different than most. It does have an audio bolus option which is designed to allow you to bolus without looking at your pump. As Paul – who runs GBDOC web site and tweetchats – said, you press then button and it beeps allowing you to count the units, meaning that a hidden pump does not have to be accessed. Don’t be confused though, this is not a rival for the covert bolusing offered by the Accu-check Combo.
Amy and I played with the insulin-filled 2020 and within seconds she was bolusing, dripping insulin all over my fingers – the little tyke! (ha ha). We played with all the other functions and it made Amy realise that a transition to this pump wouldn’t actually be a problem.

Food list

Annie hasn’t really set this up on the new pump but the Vibe has a food list. It’s a list of up to 500 foods and their carb values and could serve a limited use, although with mobile phones these days and MyFitnessPal – other apps are available! – it’s hard to see it being used a great deal. Ironically, for a pump which is regulated in the UK (but not the US) for CGM use, the food list is not populated in models outside of the US. So UK users need to create their own food list, from scratch.
Having said all this it could come in useful as Amy is due to go to Europe on a school trip a few weeks after (hopefully) getting her pump. We could therefore pre-load a Vibe with a list of common foods indigenous to where she’s staying. This would be useful as she’ll not have an internet connection on her phone whilst there.

It’s waterproof

Yeah, yeah, it’s waterproof, it’s got an IPX8 rating just like the Accu-chek Combo has. So why then do Roche tell you to try not to get the Accu-chek Combo wet, whereas Anniemas* actively encourage an occasional dunk.
A friend Laura told me last week that a mutual #DOC friend was at the Anniemas* stand at this year’s HPC13 conference and their rep told her to dunk her Vibe in a pint glass of water and leave it there. They’re obviously pretty confident about their IPX8 rating. (IXP8 means ‘Protected against water submersion – The equipment is suitable for continual submersion in water under conditions which are identified by the manufacturer. ‘.)
For info Medtronic’s Paradigm Veo pump is rated as IPX7 (Protected against water immersion – Immersion for 30 minutes at a depth of 1 meter).

Ergonomically easier to sleep with

Paul made a very valid point (I’d not thought of) when he showed us the back of the Vibe. It’s curved. This, he said, made it much nicer to wear against a curved part of your skin. He also said that as he’s got to carry or wear his constantly for the next 4 years it makes sense to pick a pump based on weight/size/design. It’s a very valid point (yet again).

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

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

Climbing each rung

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

Where to start the research?

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

Research, research, research

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

The hospital’s view on pumps

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

#DOC to the rescue for pump advice

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

Time for our first real pump demo

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

Rung Four: 9:30am tomorrow

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

Rung Five: 1pm tomorrow

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

All demos done

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

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

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Ladakh, India
By Jochen Westermann via Wikimedia Commons

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

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

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

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

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

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

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

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

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

 

First questions from a newly diagnosed diabetic

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Questions
Questions, questions.

Here is a list of questions I wrote on my pad within the first 24 hours of being diagnosed.

Will I have diabetes forever?
They told me straight away that I would.

Will I need insulin for every meal?
Yes, I would need to take insulin with every meal and also take some other insulin before bedtime.

Does this mean I can’t go to India anymore?
This question is discussed in the article ‘Does this mean I can’t go to India anymore?‘.

Will I spread diabetes by hugging someone?
I love hugging, it makes me feel happy but I didn’t want give my friends and family diabetes. The answer is no of course 🙂

Will I spread diabetes by kissing someone?
Same as above.

Will I always need to do lots of blood sugar tests or is it just because I’ve just been diagnosed?
Yes, it’s best to always test your blood sugars often.

Why do I need to take two different insulins?
One acts quickly and is for the meals you eat and the other one which you take at night lasts longer.

Diagnosis – a diabetic 10 year old’s viewpoint

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

Diagnosed 29th December 2010

Feeling poorly

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

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

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

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

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

At the Doctor’s Surgery

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

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

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

At the Hospital

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

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

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

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

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

“Yes, I’m afraid you will”.

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

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

My First Injection

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

“Me”.

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

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

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

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

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

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

Diagnosis – a Mother’s viewpoint

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Jane, at the Kailash Temple, Ellora, India

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

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

But it all went wrong.

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

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

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

Alarm bells were going off in my head.

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

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

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

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

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

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

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

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

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

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

Diagnosis – 29th December 2010

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Amy was diagnosed with type 1 diabetes on the 29th December 2010, aged 10. It was an open and shut case, no possibility of it being anything else.

When I look back now I can see that she displayed many, if not all, of the classic signs of someone with type 1 diabetes. Of course, back then we didn’t what they were or what to look for.

STOP (for a moment): Do you know the classic signs of someone with undiagnosed type 1 diabetes? If not, please take some time to view this excellent video by Diabetes UK and JDRF.

httpvh://www.youtube.com/watch?v=tYlQTylh_0M&feature=plcp

The day before, Amy and Jane had gone shopping but just before going Amy drank a lot of water. In the shopping centre she needed the toilet, then said she was very thirsty, she was trapped in a circle of constant drinking and urinating, a first circle of blue. A classic sign; we didn’t know.

Clearly something wasn’t right.

Jane had previously spoken with one of our good friends who mentioned the possibility of diabetes but it wasn’t until Amy started drinking pints of water that Jane recalled the conversation. The appointment was booked for the 29th at 10am, a few hours before Amy was due to go to her best friend’s birthday party.

Our doctor didn’t need time to ponder the options and after testing for ketones and her blood glucose level he called the hospital quickly, saying that they’d call us if we needed to go in, but he’d see if any visit could be postponed until the 30th so Amy could attend the party. Afterwards, Jane and Amy went to visit the birthday girl just to let her know that she might come, she might not.

A few minutes later that bloody phone rang. My heart sank.

At the Royal Hampshire County Hospital in Winchester hospital we went into Sophie’s Place, an area created by the charity Sophie’s Appeal in memory of little Sophie Barringer who lost her life to Wilm’s Disease in December 2004, aged six. Jane was her teacher.

A nurse did another few tests and discussed some personal history, asked about Amy’s symptoms and checked her blood glucose again. We were led into a consultation room by the DSN (diabetes specialist nurse) who started chatting with us, but at the time I felt like it was small talk, just some calm before the storm.

Then a word we didn’t want to hear was spoken, it started with ‘D’, it ended with tears.

Amy didn’t know what it really meant. Jane didn’t know what it really meant. I glanced at Emilia, we both knew exactly what it meant. I glanced at the DSN, her eyes were watering.