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Quickest clinic appointment ever

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20190519, distribution cut downLast night’s clinic appointment was the quickest one ever, not that time is a measure of a successful appointment, but it felt really nice. Normally Amy has great chats and lot of time with her normal Consultant but this time she had a Doctor she’s only seen once, some time ago.

Other than clinic notes the new Consultant knew nothing about Amy’s history with the pumps, she’d never seen her/a DanaRS or knew that Amy has used DIY looping part time for a while now. (Amy’s not a fan of wearing CGM so has regular breaks from CGM/looping, her choice, it works well for her.)

As usual all the measurements were taken, then as soon as we’d sat down in the waiting room Dr L came to get Amy, who asked me to go in with her. She’s in transition clinic so naturally she takes the lead on whether parents go in, and she always wants us there, under no pressure I should add.

Dr L asks Amy how she is.
Amy feels good, explains her diabetes just started going well again after a worse time, without her doing any changes. She feels in control, everything’s fine.
Dr L: “That’s great. Do you have your Diasend reports, we had trouble accessing your account”
Amy explains we don’t really do that, we give them Nightscout reports as we fund CGM, so it’s better than a few BG checks per day.
Dr L hasn’t really seen Nightscout reports from us before, but we’ve given her a range of 1 week and 3 month reports (distribution/time-in-range reports, percentile (AGP-esque) chart, weekly success).
She’s pleased. “Look at those graphs, that night time section is really tight”.
Meanwhile the DSN asked if Amy was looping and after I nodded she explained to Dr L that Amy was looping with the DanaRS which she got in November. Amy estimated that she’s looped 60% or more of the time since December.
“These results are what we’d like to see for all our patients, well done.” said Dr L.

After the (not the most crucial thing but still interesting) HbA1C result was ready with its pleasing 0.4% drop since 4 months ago – which had dropped 0.4% from the one before – Dr L asked Amy some diabetes management questions (alcohol etc.), asked Amy if she had any questions (“No, I’m fine”) and we left.

20 minutes.
Still had to blooming pay £1.80 for the car park though.

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.

Worst first ‘transition’ clinic ever?

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transition

So then, transition is a process which takes time.

A first chat about transition

Shortly before Amy turned 15 in November we had a home visit from our lovely DSN who talked about transition and said that at the next clinic Amy could, if she wanted to, go in to see the Consultant by herself. Amy said ‘no thanks’ and said we’d go in together.
That clinic was yesterday.

A normal clinic

Normal practice is that Amy gets measured and weighed and we wait until either the DSN or the Consultant is available. Sometimes everyone meets together, all squished into a tiny room.
With the Consultant appointment we will produce reports from Nightscout or Diasend and talk over anything we need to. We chat about care, school, events, issues, new technologies, insulins and so on.
With the DSN (and Dietician) we talk about pump infusion sites and little else. The Dietician doesn’t mention anything since I called her out on some factless stuff she’s said in the past.

Yesterday’s clinic

Arriving in clinic and with measuring and weighing all done we sat alone in the waiting room.
The DSN arrived and called Amy, we presumed to get her HbA1c done, but after a couple of minutes she hadn’t reappeared. Jane and I guessed she was in the loo. After a few more minutes we realised she was in with the Consultant, alone, going against what was said in November.
Ten minutes later Amy reappeared with the Consultant and asked me to guess her A1C. I failed, it had risen 0.9% and it took me by surprise. To be fair as a family we have worked on – and have succeeded – getting her standard deviation lower, removing the hypos. So it’s no surprise it has gone up. What did surprise me was the lack of concern from the Consultant but I thought that we’d get the chance to talk it over.
We didn’t.
She disappeared with a ‘sorry I’ve got someone else in there now’. ‘Really, what about us, what about our appointment?’ I thought, presuming we’d get a chance later.
The DSN arrived and called Amy but this time we stood up and went in too much to the surprise of the DSN.
The standard checks of site scars and tissue were done and we were asked if we had any questions…

‘Can we talk about transition please?’

They seem surprised I would want to talk about how today’s clinic had gone and said that it’s normal.
I suggested that if us parents would not get the chance to talk then Amy might as well be in adult clinic already. The Dietician told me that I was ‘lucky’ (cue dumbstruck face) that they’d left it until 15 as their guidelines say anytime after 12.
TWELVE.
Are they seriously trying to say that they think it’s a good idea for 12 year old kids to go it alone? Or was this yet another CrapFact the Dietician dreamed up?

Do they think we’re both here because we don’t work?

Let’s not forget that I had taken a day’s leave from work and Jane was losing her day’s wages to be able to attend clinic as a family.
That’s something we don’t mind doing at all, but there’s no point if we have no involvement.
That’s a cost DLA offsets but it’s also the cost of another self-funded Dexcom sensor. Hmmm, pointless clinic appointment or another CGM sensor. Right now, there would be no contest if we didn’t need them.

Is it time to change Hospital?

The way I feel right now, the way Jane feels right now, and faced with a lack of education (previous and future) and so far the worst transition experience ever?
Yeah, I think it is.
But…
Amy is relatively happy here, but she doesn’t realise the care she’s missing out on, she doesn’t understand what is available elsewhere, she doesn’t understand what a good transition could be.
I don’t feel comfortable switching unless it’s a family decision.

A way forward

It seems the best way forward is to let clinic know our issues and let them have a chance to respond, to see it our way, to change.
Jane and I plan to do this early this week.
If that doesn’t happen I feel it’s time to move on.

CGM: we’re live with Animas/Dexcom

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pink-vibe-sniggerOn Wednesday last week, Amy fitted her own Dexcom CGM for the first time, going live with something she’d (and we’d) been looking forward too for almost a year, 363 days in fact since she got her pump on 20th June 2013.

It was back in March that Animas announced that they had got the licence to sell Dexcom kit for use by kids aged 2-18 but communications dried up and on an off-chance call to them back in May I managed to purchase the kit required: 4 sensors and 1 transmitter at a cost of £500. Typically since we’d been waiting the price had gone up £50. We could have purchased CGM through another reseller for more money and got it a year ago but I wanted the support from two important people, our clinic and Animas. Ultimately I feel this was worth waiting for but I wonder how much support we’ll actually need.

Trying to be prepared I researched what else we might need for the CGM and purchased some funky pink Camo Rock Tape (thanks Rachel), some SkinTac (thanks Carolyn/Shaun) and importantly TacAway too. Another parent suggested that we start without using these things as we needed to make sure Amy wasn’t allergic or sensitive to the Dexcom adhesive.

Amy with new sensorFitting day arrived and all four of us went to meet our rep Emma at the hospital, along with 2 DSNs and a student nurse. As well as being the first people at clinic to have an Animas Vibe it turns out we’re the first to get Dexcom too, so our DSNs were keen to find out all about it. It’s great to have their support.

Emma explained about the kit, showing demo pumps and we went through our expectations of CGM, with Amy saying all the things Emma and the DSNs wanted to hear (spot patterns, basal checking, alerting). Normally Emma would show people some videos about sensor insertion but Amy and I had already watched the great sensor insertion videos by Diabetic Danica – arm insertion video here – so we skipped that part.

With a demo/fake sensor inserter Emma went through the routine slowly for all to see. Within minutes Amy was doing it although as it was the first time she asked Jane to do the initial plunger part. With the transmitter clipped in to the sensor Amy set up her pump to recognise the transmitter and all the other CGM settings (alerts, sounds, ranges).

Amy said the the sensor insertion was easy and painless, although she could feel something it wasn’t painful.

Then it was a case of waiting for two hours until it was time to do the two start up calibration blood checks, something you only do each time you change the sensor. Whilst waiting the Vibe gives you a count down meter which Amy kept checking during the next two hours, keen to calibrate and see her BGs on the screen. The two hour mark came just as we were waiting for the Park&Ride bus to turn up; Amy got out her meter, “no Amy let’s wait til we’re back in the car”. But Amy didn’t wait, she did the tests on the bus and smiled at seeing her glucose level on the screen.

One of the reasons for getting CGM was to make sure Amy’s basal profile was correct whilst asleep, how about this for starters (although I doubt it will stay this good):
A sleeping teenager's basal profile

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 – an eagerly awaited result

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TrialNet logo

On December 3rd last year, Emilia and I signed up for TrialNet, giving a small blood sample at the Bournemouth Diabetes and Endocrine Centre. We were quite nervous about the day and even more nervous about the result which we wouldn’t find out for ages.
It could take up to three months, it took almost that.

The results arrived yesterday by letter.
Both of us are negative; that’s a good thing.

Affecting the whole family

Only yesterday did I understand the full impact of the anticipation of the result.
Jane text me to let me know the letters had arrived so I’d already figured out that we’d both be negative, otherwise we’d have had a phone call to discuss the results. Arriving home I opened the letters to check and took Emilia’s result to show her, but I bumped into Amy first. Amy read the letter and the look of relief of her face surprised me, she was so relieved that her sister was in the clear for at least a while longer. I don’t know why I never realised how much this would affect Amy, I wish I had as we could have discussed her worries.
Emilia whilst pleased with the result said that it just meant she had a year of not worrying, that she’d have to go again in a year. Clearly no celebration as such, just a mild relief, but we discussed that she doesn’t have to go every year, unless she chooses to. I think she will.

What’s next in the trial?

As part of the trial they’d like to retest Emilia in December, one year after her last test.
For me it’s all over as in December I’ll be too old to take any further part in the trial.

Want to find out more about TrialNet

If you want to find out more about TrialNet visit the UK web site here.

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.

How social media helps us with Type 1 Diabetes

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Leaflet: How social media helps us with Type 1 DiabetesDownload my “How social media helps us with Type 1 Diabetes” leaflet

Helping the newly diagnosed

In one of the very first pages I did for this blog I wrote this about the UK Diabetes Online Community on Twitter (#GBDOC):

“The info you can find is so useful that I think that the first advice from any DSN (diabetes specialist nurse) to any newly diagnosed UK patient – or their parent(s) if it’s a child – should be ‘get yourself on Twitter and search for #gbdoc’. Perhaps they should even take it further and refuse to let you leave hospital until you’ve set up your Twitter account and started to follow a few on the #gbdoc people… okay, maybe not.”

How? What? Where? Why?

I’ve created a leaflet which explains how social media has been useful to us; when we’ve used it and the responses we got back; the types of social media channels available; how to start.

NOTE: You can easily get to this page using the URL: http://bit.ly/circlesofblueleaflet

Click the leaflet on the right to download it, have a read and let me know what you think. If you’re going to print it, print it double sided and fold the leaflet as shown at the bottom of page 1.

If you think it’ll be useful to anyone please send them a link to this page, or share it on their Facebook page using the button below.

Health Care Professionals and Diabetes charities

I understand you might not wish to put this out as official material but if you’d like to do something similar I’m happy to help. Hopefully though you can point people in this page’s direction, using this link: http://bit.ly/circlesofblueleaflet.
Want to hear the view of a Doctor about the potential of Social Media use? Read this by Dr Partha Kar: Social media in diabetes: bane or boon?.

First HbA1c since pump…the result

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hba1c machineAn HbA1c checking machine

The waiting is (almost) over

It’s time, time for Amy’s first proper clinic appointment since going on an insulin pump, the one where they’ll check her HbA1c.
I blogged yesterday about being anxious about this test, even though we all know it’s a flawed test right? 🙂
Today I don’t feel anxious at all, just excited as I’m more positive about what the pump’s done for Amy and some of the work we’ve put in.
Whatever the result I’m annoyed with myself a little as I know we could have worked harder at this but that’s easy to say now we’re 3 months in to using a pump; I wouldn’t have said it at the start (even though we’ve had few problems).

In Diasend Heaven

I’ve been uploading Amy’s pump/meter data on to Diasend regularly and have sent the login details to the clinic but will they have looked at our data? I very much doubt it.
Amy is the first child at our hospital on an Animas pump – our choice – and so the use of Diasend is new for our clinic. It’s okay though, I don’t mind, I’m happy to show them how it all works.
I’ve printed off the key reports and I hope the nurses and Doctors will be impressed about how easy they are to understand, certainly less complicated than I remember our old Accu-chek reports being.

It’s clinic time…

Here we go, it’s time to go in…wish us luck.

The result

7.4
That’s a drop of 0.8 since the last one… and we’ve not even really been trying.*
Get in.

* following some idiotic criticism when I’ve said this elsewhere I feel I should qualify the statement: in the first 3 months we’ve let Amy enjoy the pump and its benefits, such as bolusing for snacks, which in turn means she’s had lots of snacks, something she hadn’t done for 2.5 years. We’ve not been using combo/wave bolus, nor looking into super-bolusing etc.

First HbA1c since pump…anxiously waiting

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hba1c machineAn HbA1c checking machine

Anxiously waiting

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.

HbA1c – a flawed test

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.

Previous results

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.

Why the anxiety?

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.

What do I think is going to happen?

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…

Getting an insulin pump – a superb 24 hours

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Pretty in pinkAmy and her new insulin pump and her new DiabeTees iPump t-shirt

A busy (sinful) 24 hours

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

Early rush for clinic

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

The dreaded hbA1c check/result

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

First up: DSN

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

Second up: the Doctor

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

Costa: an easy place for diabetics

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

Retail therapy

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

Two hourly testing results

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

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

Getting an insulin pump – the day has dawned

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Amy and her new pumpAmy and her new insulin pump and her new DiabeTees iPump t-shirt

Woohoo, we’re live and pumping

What a long day it’s been, but a great one and one which has left us all still smiling.

Welcome to our world…

Dr Sheldon Cooper (Amy’s new pump name), or Sheldon for short, or Shelly when he’s feeling a little sorry for himself. If you don’t know who he is then do a quick Google, he’s a character from the Big Bang Theory, one of Amy’s favourite shows. If you know who he is then all I can say is Bazinga.

What’s in a name?

Dr Sheldon Cooper says he’s one of the smartest people alive…and he probably is. He’s much smarter than those around him.
He makes many calculations each day and in his own words he’s never wrong.
His soul mate is Amy (Dr Amy Farrah Fowler).
On many levels this pump was always going to be called Sheldon.

Our day starts

Amy awoke excited at what the day would bring.
I opened a conversation: ‘so what are you going to wear today Amy?’
She didn’t know which top to wear.
I suggested ‘what about this?’ as I pulled her new pink DiabeTees iPump t-shirt out of my wardrobe.
I’d been keeping it there for the past couple of weeks, trying not to accidentally tell her I’d bought it.
She put the t-shirt on.
Delighted would be an understatement.

Where’s my pump?

In the room today was Emma our Animas pump rep, our Consultant Endocrinologist, the DSN (DSN1) who would be supporting the pump transistion, another DSN (DSN2) who’s never used an Animas Vibe and the three of us (Amy, Jane and myself). The room was pretty full.
Emma handed over the massive box to Amy who within seconds had got the pump out, battery in and raring to go.
Such a large box of stuff, but importantly containing 20 sought-after pink cannulas, to match her pink insulin pump and pink t-shirt.

On with the training

Each of us was given a pump and we all went through the menus, primarily for the Dr and two DSNs who had not used this pump before. We are the first people in paediatrics at Winchester to get an Animas Vibe, I think though we maybe be the first of many.
Amy and I already felt quite comfortable with this because of all the training we’d already had with Annie and later with Emma.

Filling up the insulin reservoir

Amy hates needles so I had no doubt that I (or Jane) would be filling the reservoirs for the first few months.
Before we left this morning I asked Amy whether she was going to go into the session nervously or with confidence. We hadn’t discussed it much but clearly she’d chosen ‘confidence’ as she took the filling kit and insulin vial.
Slowly she filled the reservoir with insulin, cleared any air bubbles, primed the pump and filled the tube.

Fitting the Inset II infusion set

Emma talked us through using the infusion set installation, something the three of us were comfortable with as we’ve all worn one for three days previously. I was surprised that the HCPs showed no real interest as I guessed they’d not used them before.
Amy installed her set with confidence, it had gone in perfectly, but disaster struck as she immediately felt faint. Under advisement from the Doctor she put her head between her knees and within 5 minutes was feeling much better again.
Here’s Amy in showing off her pink Inset II infusion set.
Amy shows off her pink ensemble

Setting up Amy’s pump

The conversation turned to the Doctor and two DSNs as Emma asked them what settings to apply on the pump for basal, and maximum bolus settings and the like. Once they decided, Amy set the pump up under direction from Emma and a close eye from me. I feel confident in setting up basals in the future, although don’t plan to do any changes by ourselves for some time yet.
Amy clipped in her infusion set to her cannula, primed the cannula with 0.3 units of Novorapid and that was it: she was live on an insulin pump.
And relax.

Lunchtime calls, bolusing beckons

It was time for a well earned break, it was lunchtime. We decided to go the cafeteria, get some food and bring it back to the training room.
30 minutes later, back in the room and Amy did a blood glucose test, chose ezCarb from the menu, entered her BG reading (4 mmol), entered the carbs (50g), clicked ‘Show Result’ and instructed the pump to give the bolus insulin (3u).
Success, a first bolus.

Almost done

After a bit more chat about temporary basal rates, sick days and school it was almost time to go, but not before we opened one of the two boxes of chocolates we’d bought for Emma and the HCPs, to say thank you.
The box said it was 23g for three chocolates, Amy had done a test, entered the carb amount and given herself a bolus within seconds.
This is one of the reasons she/we wanted the pump and as for the last 2.5 years Amy refused to have any snack over 10g/15g as she did not want to increase her daily number of injections.

Word for the day?

Brilliant.

Pink pump, pink cannula

Getting an insulin pump – a date with a pump

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Animas Vibe pumpsAnimas Vibe insulin pumps

Rung six (or is it seven) – a date with a pump

Today, sat at work, just recovering from my 12 mile cycle to work I got a call from a number I didn’t recognise. I didn’t answer it immediately but then saw it was a Winchester number, who could it be, I’d better answer it.
It was a DSN whom I’ve never met whose recently joined the diabetes team and it was the first time I’d spoken to her, but what a first conversation to have, which lasted for the next 24 minutes.

Damn you email Spam filter

The DSN had sent me an email yesterday and was surprised not to have had a response, the team at Winchester had obviously told her how internet-addicted I am and how keen we are for the pump – I may have emailed them one or two too many times recently asking progress 🙂
I hadn’t seen the email, it had been caught up by my email spam filter which had decided to ditch everything I did want and nothing I didn’t.

Is the 20th July any good?

I wasn’t near a computer to read the email so the DSN went over the details: would dates for the 20th and 26th July be okay?
“Yes, of course, fantastic, wow, this is great”. “But I just want to check when Amy is going on the school trip in July first”.
We spoke around different issues for a while, discussing how very confident we feel about going on the pump – yes, yes, we know it’s not a cure, yes, yes, we know that Amy might not enjoy the experience – and we spoke about initial use of saline or insulin.
The DSN said she’d like to meet us before the first date, “how about a week and a half before the pump, perhaps on the 10th”.
“Yeah, sure, 10th, that’ll be fine. That’s a Wednesday right?”
“No, the 10th is a Monday”.

Hold on, you mean June?

“10th July, that’s definitely a Wednesday.”
“Sorry Kevin, I’m talking about June, not July.”
“For the chat? Then the pump in July.”
“Erm, no, for everything.”
“Crikey!”

Saline or Insulin?

Many people seem to use Saline for a week or two, just to get used to wearing the pump: we discussed the issues over what would be best.
Initially we both thought Saline would be best but…Amy’s off on a school trip to Europe mid July. So we decided going on insulin immediately was the best idea, to give us 3 weeks to iron out any issues.

A date with a pump

So there we have it, Amy will be getting her pump on 20th June, going on insulin straight away.
I’m so excited.
One week later we’ll go back to clinic to check everything’s okay and learn all the advanced techniques.
I think we’ll find it hard not to use combo-bolusing immediately!
Two weeks later Amy goes on a school trip to Germany.
Actually, I’m now blooming nervous. I wasn’t before but I am now.

 

Did I mention that Amy will be getting her pump on the 20th June? 🙂

Getting an insulin pump – carbohydrate counting training refresher

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

Rung four – carbohydrate counting

This morning Amy and I attended a carbohydrate counting training refresher course at our local hospital in Winchester. We’d already attended a similar session back in September 2011, just after we returned from India, when we switched over from giving a very rough estimate of insulin based on meal size, to a more accurate carb counting method.

Starting off badly

The day did not start at all well: we left the house at 8:30am giving us one hour to cover the 8 miles, easy, no problem. At mile 2 we joined a 5 mile queue which – on checking the traffic maps – had no way out.
We were going to be late.
Dammit.
On reaching the hospital already late we parked in the only single space left in the car park and rushed to the education centre, the one we’d be to before.
They’d moved it…to the other end of the hospital complex, right next to the car park.
We ended up being 30 minutes late.

5 families, 2 kids, 2 dieticians and 1 nurse

There were 5 families there, 3 couples came without the child with diabetes as they were only 4 or 5 years old.
The other family were from the village next to ours and live down the road from us. Amy knew the boy – let’s call him ‘B’ to protect the innocent and all that – from her previous school.
Amy is only one year older than ‘B’ but that year is immense in school years so clearly she’d never spoken to him about diabetes much, if at all. They say there’s strength in numbers, but not if you’re an 11 year old boy and a 12 year old girl.
There were two dieticians there, one to take the session, one to take notes and help out where required.
Our wonderful diabetes specialist nurse ‘V’ was there.
The session objectives were read out and off we went.

5 families, 1 plate and lots of food

On the table in front of us was a massive – 2 metres by 2 metres – canvas with a plate on it. The plate was divided into sections for fruit and vegetables; bread, rice, potatoes and pasta; meat, fish, eggs and beans; high fat and high sugar; milk and dairy food.
It was the NHS Eatwell plate, but without the food.
Then came the plastic food, lots of it, tons of it even.
We each took some food and placed it into the section we thought it should go in.
We all did very well and whilst most were placed correctly, others were not, but only a few.

To carb, or not to carb, that is the question

William Shakespeare’s Hamlet may be been completely different if it was written after the discovery of carbohydrates, but alas the immortal words are the rather less catchy ‘to be, or not to be’.
Next up then was the does-that-have-carbs-or-not quiz using the same food items, pushing those with carbs to the right, those without to the left.
That game is so easy, especially if you change it to the would-I-want-to-eat-it-if-I-was-hungry game.
All hungry people’s brains scream ‘give me carbs’ don’t they? Never I-am-so-hungry-I-could-eat-some-lettuce.
So this quiz was pretty easy for all, bar the odd argument from me – more on that later.

Breakfast time beckons

Next up we were given printed plate photos of breakfast items, ranging from two crumpets with butter, through cereal, to a full English breakfast.
It was okay though as I’d only recently eaten my cereal so the sight of all this food didn’t make me hungry.
In teams we estimated the carbs and went round the room discussing why we’d reached that calculation, before finding out the right value.
What surprised me was how good some of the people were at this. ‘B’ and Amy were by far the best at this game, which surprised me. Amy’s been carb counting for 18 months now but ‘B’ was here to learn but already seemed to know it all.
The same game was played with lunch and dinner and it generally went well.

The Fish Finger Conundrum

One of the biggest discussions was about fish fingers. One family knew the ones they have are 17g of carbs for 3, but course notes said 15g and the book Carbs&Cals says only 9g.
It didn’t seem to matter too much to most but the conversation carried on quite light heartedly throughout the rest of the session, almost like an in-joke between friends.

If it’s got carbs you should count it, shouldn’t you?

During the carb estimates whenever there was just one tablespoon of 5g-carbs veg it wasn’t counted.
It’s 5g of carbs.
The dietician said not to count it, you didn’t need to, it’s only 5g carbs.
“Okay” I said “what if there’s three lots of 5g veggies?”.
We were told we’d need to count the 15g in the total.
“Okay, what if there’s only two lots of 5g veggies?”.
“That’s okay, you don’t need to count it” the dietician said.
My logic brain took over and couldn’t keep quiet. “What? That makes no sense, 10g carbs will raise many kids glucose levels by 3mmol, which in turn needs 1 unit of insulin. Counting the 2 lots of veg at 10g could be the difference between going hyper or not.”
I was told again the we didn’t need to count it.
In my head I agreed to disagree, it wasn’t worth arguing but it still makes no sense to me.
If anyone can explain this to me – without resorting to a ‘just because’ – please leave me a comment; I really don’t understand it.

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

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

Climbing each rung

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

Where to start the research?

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

Research, research, research

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

The hospital’s view on pumps

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

#DOC to the rescue for pump advice

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

Time for our first real pump demo

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

Rung Four: 9:30am tomorrow

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

Rung Five: 1pm tomorrow

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

All demos done

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