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Diaversary #4 – meh!

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smiley-face-meh_designWas it really four years ago that Jane took Amy to the Doctors to find out what was wrong? Four years since the Doctor took that simple blood test and called us within minutes to tell us to go to hospital? Four years since my daughter found her childhood all gone?

We all try to be quite positive about life with diabetes in general but not today, today sucks. Big time. Turns out I don’t quite feel as positive as I did last year.

Whilst I truly believe that Amy’s diagnosis has actually helped in certain ways (determination to succeed, family health) I’d give it all back in a heartbeat if it meant Amy never had to do another set change, or finger prick glucose test, or think about this condition ever again.

The year ends with Amy having her lowest HbA1c yet at 7.2% and with us knowing how we could get it lower if we chose to try a little more. There’s no doubt that we’ve done some great Diabetes related things this year and that mainly focuses around the other people/children with Type 1 Diabetes, or their parents, we’ve met this year. At the moment it’s hard to focus on that.

So forget all those fancy electronic devices, your bionic pancreases, your smart insulin; just figure out how to swap my pancreas with hers. That’ll do me, let me take this burden away from her.

I’d like to think that these words will be the last time I think about Diabetes today. But I know it won’t.

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*

Blogaversary 2 on World Diabetes Day 2014

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Spinnaker Tower on World Diabetes DayIt’s hard to believe yet another year has gone by in the Diabetes world, here’s a little bit about what’s been going on.

But first, it’s my blog’s birthday; 2 years old today (well actually yesterday but let’s not worry about that minor fib). Its visits have doubled since the first year’s statistics: I’m pretty darn amazed with that. What really pleases me is that I can see from the stats that people have searched Google and found the answers in my site, that’s kind of why I started it in the first place.

In December 2013 my daughter Emilia decided to take part in the TrialNet study at Bournemouth. It was two long months before we found out her results (and mine) were negative which pleased us, although we were saddened to hear that a friend’s result was positive.

Christmas and Amy’s Diaversary (29th Dec) came and went and her 6 month old Animas Vibe insulin pump made life easier during the festive period.

Amy and KevEarly in the new year I started my shifts as a national peer supporter for Diabetes UK, answering phone calls once a week and helping people find solutions to problems, or giving them ideas from the experiences we’ve had in the family. It’s proved to be really rewarding.

AccuChekInsight1March was a whirlwind on a particular day, the 15th, which saw us have two back-to-back diabetes events, doing their impressions of buses and policemen (none around, then there’s two). The first was an education day held by the local Type 1 families group Seahawks where amongst many other things I got to check out Roche’s latest pump, the Insight. It a great event and I was sad to rush away from just after lunch. But rush we must as Amy was doing a sponsored Indoor Skydiving in aid of JDRF along with lots of kids we knew pretty well; she loved it, every minute of it.

dblogweek squareIn May I joined in with blog week and I remember how nervous I felt when releasing my poem for Tuesday’s entry: A Childhood All Gone. It turns out I needn’t have been so nervous and I think that’s turned out to be my most favourited/Retweeted/Liked blog post ever.

flatline-dayEarlier in March Animas got the green light for use of the Vibe pump with Dexcom CGM for children, something we’d be waiting for since June the previous year. One year after getting her pump Amy went live with CGM and what an eye-opener that turned out to be.

twitteravatarJune also saw me cycling 100km around London overnight with a group of friends in the Nightrider charity event, where my local group of 8 raised £2700 for JDRF. On the plus side the training for it and switching to a healthier diet has also seen me shed 1.5 stone.

My personal highlights for this last year though involve each one of my kids. First Amy spoke in front of hundreds of Paediatric Health Care Professionals in a transition chat set up by the wonderful Dr Kar from QA Hospital in Portsmouth. Secondly, it was Emilia’s prom and a combination of pride and tiredness (from Dad-taxi pick ups at 3am) made me quite reflective: The Forgotten Sibling.


wpid-20140921_133723.jpg emiliaswing

“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.

Freestyle Libre – hypos, hypers, hype and hope

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Hype

With Abbott’s Freestyle Libre launch at the EASD conference on Monday the excitement in the diabetes online community is hotting up, with some getting their hands on the device already.
(If you’ve not heard of Libre before perhaps read this: Abbott Freestyle Libre Flash Glucose Monitoring: no more fingerpricks?.)
The full facts about the product are not yet out but there’s quite a lot of rumours going around and the following seems to pop up all over the place:
– Cost, the initial starter kit will be £135 and will include two sensors which cost £48 each thereafter.
– Sensors, last for two weeks, no more, no less.
– NHS will initially not be funding Libre although there are funded trials going on and may well be special cases for individuals.
– Libre will only be available to 18 year olds and over, the kids licence will hopefully come along soon (I’ve heard that before).

Here’s a video from Abbott about getting started with a Libre, including inserting a new sensor which seems very easy:
httpv://www.youtube.com/watch?v=8cK046ORpog

Hypos & Hypers

We’ve started using CGM (continuous glucose monitoring) alongside Amy’s Animas Vibe pump to help with hypos and hypers. The CGM alerts whenever Amy goes high or low, Libre won’t do that.
We use CGM to get data to recognise patterns and make adjustments to Amy’s insulin pump’s basal profile. Libre will do that.
We experiment with different combo/wave boluses for different foods and view the results on CGM to see how to do it better the next time. Libre will do that.
In a hypo situation it’s crucial to know whether the most recent treatment of glucose is working and levels are coming up, CGM doesn’t react fast enough so isn’t used for this only blood checks will do. This will be interesting how Libre compares to Dexcom as Dexcom samples every 5 minutes and has about a 5 minute lag, so you could be up to 10 minutes out. Libre though samples every minute but what is it’s lag? If it’s close to Dexcom then it might be up to 6 minutes out, but if it’s closer to older CGMs it could be up to 16 minutes out.

Hope

Without seeing results of trials this product gives me hope for Amy’s future, hope that technology is moving so fast at the moment that even without a cure her life will be more bearable on a day-to-day basis, more hope that this will lead to lower HbA1c’s (without hypos/hypers) and no complications.
Day-to-day it might be able to relieve the soreness of her fingers.
During the night it will mean we can check her levels more easily when she’s asleep. She has a habit of lying on her pump which means I can’t get to it without waking her up.
I hope that this device becomes a mainstream alternative to fingerstick tests and NICE/NHS will fund it on the basis of a lot less test strips being used. I would also be happy to co-fund it like others in my clinic do for the Omnipod insulin pump.

Abbott Freestyle Libre Flash Glucose Monitoring: no more fingerpricks?

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The information about Abbott’s Flash Glucose Monitoring seems to be getting stronger by the week with little snippets being released every now and then.

In summary
From what I’ve read and watched (and hopefully understood correctly) I take it that:

- Abbott’s Flash Glucose Monitoring will require a sensor to be worn for 14 days
- The sensor is factory calibrated and won’t require fingerstick calibration like normally CGM.
- No more fingerstick glucose checks will need to take place.
- There will be a reader which will be can be swiped over the sensor to get the current glucose reading.
And the killer selling point (from my point of view)
- The sensor stores the last 8 hours of readings, so swiping over it in the morning tells you what happened during the night. Priceless.

 
 
One of the most recent bits of information I’ve come across featured a video about testing whilst in a fast-paced job.

A world without fingerpricks?

So no more fingerpricks and no more sore fingers?
No more wondering what happened to blood glucose levels whilst asleep?
Parents being able to check their kid’s glucose levels during the night without waking them?
Adults being able to basal test during the night without having to wake themselves up and potentially altering the result?
Basal injections or basal profiles on pumps being able to be finer tuned.

But is it a replacement for CGM?

In a word, no, well not as such.
No, it won’t give any alarms about low or high glucose levels, or rapidly changing levels.
No, it won’t be able to do anything like the Medtronic pump’s Low Glucose Suspend mode which shuts off delivery of any insulin if their CGM tells it the glucose level is below a minimum level.
However…
As a family which has only used CGM for almost a month it would be good for us as the key thing we’ve been doing with CGM is to get the overnight basal profile correct for my daughter’s insulin pump. We’ve also been using it to see how different foods change glucose levels.
For these two things the Flash product would be great.

Pie in the sky? Make or break?

With the sheer volume of information coming direct from Abbott themselves it’s hard to see that this could be pie in the sky. I’ve heard that Abbott expects Flash Glucose Monitoring to be at the core of their business within a few years and they’re rumoured to have told the stock market this, so it sounds like it’s a make or break thing for them.

The next announcement?

There will hopefully be a lot more information coming in the next couple of months leading up to Abbott’s symposium at 10am on 15th September at EASD2014 (European Association for the Study of Diabetes) in Vienna.
If you’re not one of the lucky ones whose able to be there you can register to view it online, like I have.

Pricing: the big question

Hopefully they’ll announce the date Flash Glucose Monitoring will become available and how much it will cost.
Hopefully it’ll be at a cost acceptable to the NHS – but I doubt it.
Maybe the NHS would partially fund it, with the people with diabetes (or their parents) funding the remainder. I’d be interested in doing this although I’m not sure how much I’d be willing to pay.

 

 
It’s fair to say I’m pretty excited about this.

A great start to using CGM to get the bigger picture

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wpid-20140619_173616.jpgA few weeks ago on the 18th June Amy inserted her first CGM sensor. On the 12th July she took it off.
It lasted 25 days.

Initially it was very exciting seeing how accurate Dexcom was in comparison to Amy’s normal finger-stick checks, seeing those graphs, flipping between 1 hour graphs, 3 hours, 6, 12, 24.
Then it felt scary: how high she had gone after a meal, how high during the night, the fast dropping blood glucose levels, the lows after school.
Then it felt like we could put this information to use and start to alter Amy’s basal/background insulin levels. That is after all one of the key reasons we got it.

A screen full of information

flatline-day

The screen shows a lot of information:
The red line is the level where Amy will get alerted that she’s ‘high’, we’ve set it at 13.3mmol/L.
The blue line is the level where Amy will get alerts that she’s ‘low’, we’ve set it at 4.4mmol/L.
The dotted green line is her CGM trace which believe me doesn’t often look that flat, it’s more like a section of the alps or England’s rolling hills.
So in the blink of an eye you can see it’s 13:56 and Amy is currently 6.7mmol/L and rising, steadily, because at 1pm (one yellow mark from the right) having slept in really (really) late she woke up and had lunch 30 minutes later.

An opportunity for experimenting and learning

Combo bolus (60/40/2.5hrs) for Rice/CurryCombo bolus (60/40/2.5hrs) for Rice/Curry

Some graphs don’t initially look very good at all, but they are as they’re always opportunities for learning. Take the one on the right, it’s a graph of us experimenting with eating a Chicken Xacuti curry and rice and giving a combo-bolus on the pump of 60% of the insulin immediately and the remaining 40% over 2.5 hours. It tells us a lot…don’t eat rice (joke).
From the graph we can tell that need to give less insulin up front so we’ll probably try a 40%/60% next time. We know this because she started at 6.5mmol/L and dropped to 3mmol/L(ish) within the first 90 minutes.

Analysing the averages

Unfortunately the previous graph isn’t too much use because at that time Amy’s basal/background insulin was wrong and her levels were high from 10pm until about 4am.
How do we know? We uploaded the CGM data to Diasend and analysed it, although at first it didn’t make us feel very good to see what was really going on:

diasend

That looks all very confusing but the two key things look at are the green bar (which is the magic zone of between 4mmol/L and 8mmol/L) and the red line which shows the average blood glucose levels for each particular time of the day.
It tell us we have a problem: she’s rarely in that magic range, her average is too high, she needs more basal/background insulin.

The foundations need some work

Deciding to focus on the night time of 10pm to 8am we didn’t do any changes to her basal profile for two weeks as we wanted to discuss the CGM results with the nurse at clinic. We all agreed on the changes required and then watched the next few nights’ graphs, making some tweaks here and there, before finally getting the graph below, although we’ll make sure she’s a little higher when she goes to bed from now on.
flatline

Portsmouth’s second SweetMeet – another privileged invite

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amyprize2Amy shows off the carb counting scales she won at the SweetMeet

In the middle of a busy weekend – clinic yesterday, TeamBloodGlucose cycle ride tomorrow – Amy and I had an invite to the second SweetMeet organised by the team at Portsmouth’s QA hospital. For us it was another privileged invite being personally invited by Dr Partha Kar for the second year running.

Amy and I met Laura and Tanwen as soon as arriving, then with a breakfast bacon butty in hand had a nice chat JDRF’s Sue and DRWF’s Lee. Helen the pump rep from Roche was there and to our surprise our Animas rep Emma arrived, pleased to see Amy and to hear that she was getting on well with her Dexcom CGM, which Emma trained us in only two weeks ago. It’s really lovely coming to events like these and knowing so many people, it’s like one big family.

Kicking off with a great team

SweetMeet2 was officially opened by Lisa who referred to herself as just a nurse before introducing the team who had given up their spare time. With the plan for the day read out Dr Partha Kar stepped up to start the day off, but before doing so he praised lead nurse Lisa for the dedication and hard work she puts in keeping the department running.

66 years and the future

nhs creation leafletWith the NHS being formed 66 years ago to the day Partha outlined the changes in the NHS and in particular funding, explaining that funding had been matched to requirements from 1948 until a few years ago when funding plateaued, starting a funding gap which is unlikely to close any time soon. But there is hope and it will be found by making sure the right people perform the right jobs, freeing up the Wizards (Consultants) by getting the Gatekeepers (GPs) to perform the tasks they can – these references coming from Nigel Mathers and Paul Hodgkin’s 1989 story about the NHS “The Gatekeeper and the Wizard”

Speed-dating with the professionals

Next up it was time to speed date with the professionals, with the audience staying at their tables and professionals moving around the round to ask/answer questions during each 7 minute slot. Seven minutes goes very quickly when questions are being asked and it’s amazing how much you can cover during that time.
The podiatry and retinopathy sessions explain a lot about the processes that we know very little about and gave answers about what you should expect (nerve tests on bottoms AND tops of feet) and by whom (GP surgery nurse).
Partha did a session and an important message came across: people can and should help themselves, a message I’ve lived by since discovering the #DOC (Diabetes Online Community). The bigger question though is how to get those not already engaged to become so as those at the SweetMeet were clearly engaged already.

My favourite speed date

My favourite speed date – this sounds awkward 🙂 – was with Dr Iain Cranston, who chatted about Abbott’s Flash Glucose Monitoring, something I’m looking forward to being announced officially in September at EASD in Vienna – like many I’ve had an invite to go but can’t quite justify it. It has the potential to revolutionise finger-stick tests as it promises to do away with them, instead relying on swiping a NFC device across a sensor which is changed every two weeks. I didn’t think much of this technology initially but when I realised that it stores the last 8 hours of tests I realised it could be used as a non-alerting CGM, which is just fantastic. Fantastic that is if Abbott pitches it at a price to rival meter strips.

Breakout session 1: are all carbohydrates equal?

This year saw the introduction of two breakout sessions, with Amy and I going to the one of carbohydrates.
With a session of 45 minutes, 15 people and two dieticians it was like being a kid in a sweet shop, although obviously the first rule of SweetShopClub is that you don’t talk about sweets in front of dieticians. 🙂
Starting off with some simple carb-counting we moved on to GI which raised some interesting discussions, based bolusing for low-GI and wave bolusing techniques for pump users.
It was the first time I’ve been able to talk sensibly with a dietician about LCHF (low carb high fat) diets, their effect/usefulness and more importantly whether they’re suitable for kids, or can be adapted to be so.

Breakout session 2: new developments for type 1 diabetes

Dr Iain Cranston held our second breakout session which started with us all stating the new developments we wanted to know more about. With islet transplants and stem cell research already on the board (two things which could go hand in hand to get people off insulin) I offered a couple of other things: smart insulin and inhaled insulin.
Dr Cranston’s knowledge of developments is great and filled us all in on each of the developments, answering my questions about beta-cell replacement whilst super-T cells still exist.
How often do you get the chance to ask questions like this, that’s the beauty of something like the SweetMeet. I have a feeling that if the allocated time hadn’t run out Dr Cranston and I could have chatted about stuff like this for hours.

A patient’s experience: educate yourself

Lee Calladine, spoke about his life with Type 1 diabetes which he was diagnosed with aged 33. As DRWF’s Event Organiser Lee organises events such as the DRWF Wellness Day South which I attended two weeks ago as well as last year.
Lee’s message fitted in nicely with Partha’s: educate yourself, find out about your diabetes and your gains will be great. Since educating himself Lee feels more in control, has got his HbA1c lower and minimised his risk of complications and that’s something we all want.

Thanks Sue

The second SweetMeet was a huge success in my opinion and Sue, one of QA’s dieticians, should be thanked by all who attended for organising a great event. Well done Sue, we really enjoyed it.

And finally, Amy wins another prize

At last year’s event Amy won a bottle of champagne in the carb counting quiz, which of course was commandeered by myself and consumed shortly thereafter. With high hopes she entered this year’s quiz and alongside a few others won another prize, this time a set of Rosemary Conley Nutritional Scales which will hopefully be very useful for carb counting.
Here she is with them:
amyprize2

Diabetes UK are Making the Grade

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Hands up for Good Diabetes Care tweetI saw Diabetes UK’s ‘Hands Up for Good Diabetes Care in Schools’ a while ago, after seeing a tweet from a rather proud Andy, proud of the video 10 year old Lewis starred in.

If you’ve not seen it take a look by playing the video below.

A great campaign

Make the Grade is yet another great campaign from Diabetes UK and I’m really grateful for all that they and all the other diabetes charities do to make my daughter’s journey from school and life that little bit easier. Although she’s one of the lucky ones, backed by a school who are willing to make the adjustments necessary for people who need them.

httpv://www.youtube.com/watch?v=IDsUSoDtyjM

Sticking up for our kids’ rights

Others of course are not so lucky, such as Andy & Zoe’s Lewis who was excluded from a residential trip because of his condition, with the school expecting Zoe and Andy to bring Lewis home every evening during the trip. The school was clearly discriminating which is why a tribunal found in favour of Zoe & Andy but isn’t it a shame any parent needs to ever battle with a school over their child’s care. I’d do exactly the same, in fact, I almost did.

Sticking up for my kid’s rights

It was way before I ever got to know Zoe or Andy – in fact we still haven’t met – that I printed out a cutting about their court case and headed off to my daughter’s school only a few weeks before she went on a school trip to Germany.
I gave the article to one of the school management team and said “please read this and tell me if we have a problem”.
“No Mr Winchcombe, everything will be fine.”.
And that’s how it should be, for every child and parent.
For those parents who aren’t so lucky that have the backing of Diabetes UK and their Make the Grade campaign”.

What can other parents do?

First, watch the video embedded above if you haven’t already.
Visit the Make the Grade section of Diabetes UK’s web site.
Order up the parents pack and maybe order up a school pack too.
Be aware of what schools should be doing.
Make sure your school is giving your child good care and if they’re not approach them, talk to them, educate them (ah the irony).

DRWF Wellness Day – 21st June 2014

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drwf logoI joined many other friends and local people with diabetes at the 6th Annual Diabetes Wellness Day South, held by the Diabetes Research & Wellness Foundation in Southampton. Last year’s event was a good one so I had high hopes that this one would be as good; it was. The Wellness Days are whole day events which cost £5, starting at 9am and finishing at 4pm, with a lovely lunch included (worth the £5 alone). There’s many presentations plus there’s the opportunity to ‘Meet the Experts’ during a mid-morning break.

What made this day so good for me was not just the presentations/demos/food/free-biscuits but the fact that I shared it with friends from the diabetes online community and more importantly my Dad who recently become a volunteer helper for DRWF. Dad has Type 2 Diabetes, something he’s lived with for years.

Starting the day off

Dad and I arrived at the same time and it was lovely to see the DRWF people chat with him and knowing that he can talk the hind legs off a donkey I left them to it. I bumped into Michelle and had a chat, said hello to Helen, then Lee, Sarah, Claire before heading off to chat with my friends Tanwen, Kelly and Steve. It looked like the event itself might get in the way of networking 🙂

Human Islet Cell Isolation and Transplantation

Professor Paul Johnston gave a very interesting talk about his work with islet cell transplantation, cells which he explained only form 2% of the pancreas, so most people with Type 1 have a pancreas which is 98% ok. It makes sense then the a transplantation of islet cells is a better option than a full pancreas transplant giving the risk of rejection for a new organ. I had no idea how quick the transplantation process was for the patient, less than an hour. Just imagine that, you spend years and years dealing with diabetes and in less than hour you’re cured, at least for a few years. Obviously it’s not quite that simple, there’s a little more to it.
Rae-Marie Lawson spoke about the islet cell transplant she’s had and how she’s getting on now, an uplifting story considering given the lack of hypo awareness she had.

Meet the Experts

This breakout session gave everyone the chance to have a chat with the representatives from various companies, NHS departments and charities.
There was another group there with a stall, the Sugarbuddies, a new initiative for peer support for the newly diagnosed Type 1s in the area. I’m proud of Laura, Kelly, Tanwen, Steve and Meghan who are a driving force behind this project and with their backing it’s sure to do well.
I spent much of the breakout session speaking with Mandy from PEDS (Ponies Educating Diabetics and Siblings) which is held at the local stables where my eldest daughter Emilia has been doing her Duke of Edinburgh volunteering recently. I’d never met Mandy before but she recognised me instantly from my peer support article in the Daily Echo. Mandy was lovely and it’s a great thing she’s doing with PEDS.

What the dog nose but can’t tell you

Next up was a talk about Medical Alert Dogs and how they help with alerting their owners that they (or their child) is going too low or too high. I’ve not only seen this talk three times now but I’ve seen Claire Pesterfield’s dog Magic alert her that she was hypo so I understand how good they are. Whilst I also love the idea of having one for Amy I’m not sure our cats would like it.
I also had another idea…HypoMeerkatTweet

Supermarket Sweep

Sarah Woodman (Diabetes Specialist Dietician) – another one of the Sugarbuddies – held a session talking about food, or rather food choices, about labelling and healthy options. I’m not sure much of it was new information to people with Type 1 giving the regime they have to follow carb counting everything but I’m sure the majority of the audience (of Type 2s) would have learned a lot.
Given some of the recent changes in food advice I was pleased to hear Sarah get a particular point across: SupermarketSweepTweet
I love eggs and eat quite a few per week, my total cholesterol is 2.58, so clearly that old advice was rubbish.

Diabetes, Ramadan and the Hajj

Dr Hala Alsafadi gave a quick presentation on observing the religious festivals which managing diabetes.
Ramadan, which started yesterday (29th June 2014), is a period where followers fast between sunrise and sunset in the locality. Ramadan shifts throughout the 365 day calendar year and for those resident in the UK the new few years are going to prove tough as Ramadan spans the longest days of the year. Today where I live sunrise was 4:54am and sunset is 9:23pm, so that’s a period of 16.5 hours where observers cannot eat, that’s got to be pretty tough for anyone, let alone with Type 1 and Type 2.
Luckily people with Type 1 Diabetes are exempt from this, however many choose to observe the fast.
Diabetes UK have produced some advice about Ramadan: Managing Diabetes During Ramadan

The Tai Chi Escape Plan

After a healthy lunch it was time for the Tai Chi session but neither me,Steve,Kelly,Tanwen or Laura fancied doing it so we slid out and headed to the nearby McDonalds for a drink and a chat. It’s such a nice little group we’ve got locally, just a shame Meghan couldn’t make it too.

Tabs and Jabs

Dr Mayank Patel started the last presentation talking about the many different types of medications available and mentioning some which he hoped people weren’t taking, luckily no-one raised their hands.
Advanced Specialist Pharmacist Philip Newland-Jones finished the presentation talking about prescriptions, medication and pharmacists. It was the first time I’d heard Philip talk and I thought he did really well, getting his points across, having empathy with the audience and especially some disgruntled ones.

Ask the Experts

This was a open question session for the audience to ask whatever they liked. Questions ranged across many subjects and each was answered by one of panel members (Dr Patrick Sharp, Jan Mitchell and Sarah Woodman).

The forgotten sibling?

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Emilia on her prom busEmilia on her prom transport, a wonderful old London bus

It’s 4:58am and I’m sat here awake, unable to sleep after picking up my eldest, non-pancreatically-challenged daughter, Emilia up from her after-prom party. It’s suddenly struck me how much of our time is geared up for managing Amy’s diabetes, or dealing with Emilia’s GCSEs and switch from school life to college life. Last night was completely different and it was lovely to focus on something wonderful and filled with joy: Emilia’s prom.

I’m not sure how often I stop and wonder how Amy’s diabetes affects Emilia, but I’m sure it’s not enough and it needs to be more. We’ve had a fair few chats about it but they never last long and it was only when we had a day off together whilst taking part in TrialNet that we spoke in detail about it all, how she felt, her worries and her fears for both herself and Amy.

Some months after Amy’s diagnosis Emilia and I ceased our only scheduled Father-Daughter activity, going to watch Southampton play football, and whilst this was more about finance and definitely nothing to do with diabetes I wish we’d carried it on. Soon after I launched into a world of finding out more about Type 1 diabetes; I wonder if Emilia links the two together. I should probably ask her. Today.

Last night’s prom turned out to be everything Emilia hoped it would be, meeting the high expectations that five years of dreaming about it had built. Surrounded by a great bunch of friends arriving together on a red London bus – which in my opinion looked far nicer than the posh cars which blurred into each other and will be forgotten tomorrow – I couldn’t be more proud of her. I should probably tell her this again. Today.

On hearing how she cared for several friends at the after prom party I realised that in some ways we’re one and the same, both worried more about other people’s health than we are about ourselves, both wanting to make sure others don’t end up in trouble or danger, both wanting to make sure that people get the pastoral/medical care they need. Again, I couldn’t be more proud.

I hope then that she doesn’t feel she’s a forgotten sibling, losing out to her sister’s care and the time that all takes. I hope she’s realises that we have no choice to spend time doing these things to make sure her sister lives a long and healthy life. I hope she realises that if diabetes didn’t darken our doorstep this inequality of time she suffers just wouldn’t happen. I should probably make sure of this. Today.

I’ll leave you with a picture of my eldest daughter, Emilia, a beautiful girl with a great future ahead of her, sitting on the swing beneath our apple tree.
emiliaswing

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

Nightrider London awaits

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NightRider2Three days from now, at dawn on Sunday, I should have just finished cycling 100km around London, raising money for JDRF. I truly can’t wait to do it particularly as I’m doing it as part of a team mainly consisting of my work colleagues.
We start off from Crystal Palace at 10:35pm anti-clockwise through Tower Bridge, Canary Wharf, Olympic Park, Alexandra Palace, Waterloo, Whitehall and The Mall before ending up back at Crystal Palace.

A team grows
Last year I read about Nightrider shortly after cycling next to Gav in his GBR30/30 challenge and it captured my imagination, so I decided to do it in 2014, probably by myself.
Discussing it at work and Jon decided he’d do it as well, perhaps we could ask a couple of others he suggested. A few chats later and the team grew to 5 from work and Steve who lives close by. A month later and we’re up 8 cycling for JDRF and 3 cycling for CancerResearchUK. In total there’s 21 JDRF riders starting from Crystal Palace including my team plus Nick, Mark H, Andrew whom I know from either Twitter or the Cycling at JDRF Facebook group. There’s also a lot of JDRF riders starting from Alexandra Palace about an hour later.

A few of us enjoying a rest after a cycling sportive: Mark P, Kev, Jon, Mark H
jdrf cyclists at bbq

Raising funds
We’re riding for JDRF and they’ve set a target for each person of £175 per person, on top of the £39 registration we’ve each paid. For this £175 JDRF have bought a charity place from Nightrider for £60 and on top give each cyclist a JDRF cycling jersey, which in itself must be worth £35. So in theory JDRF don’t get much money in from this event, just £80 per person if they reach their target.
A few days ago I was concerned we wouldn’t reach out target, it sat £400 short of our combined target of £1400. In the last few days though sponsorship has come flooding in and we’re close to £2000 already.
Sponsorship page is here if you want to see how we’re doing…or donate.. bit.ly/nightridertf.

Training, training, training
For some cycling 100km is easy but there’s only one of our team – Steve – who could boast this, with Shaun coming a close second, for the rest us it was going to take a fair bit of training. So off we set on our first training ride back in January, a mere 30km but a distance which seemed daunting at first.

From our first training ride
Juli, Kev, Jon, Tim, Sue, Mark, Steve, ShaunNightriderTF-1

Training rides got longer week by week, some hills got thrown in and the weather started improving. A few other friends/colleagues started joining in the rides and a few of us managed to get out each weekend.

A hilly ride around the South Downs
NightriderTF-2

We set a target for 60km on April 21st when many of us entered a local Sportive. Five of my team did it along with two other Nightriders, Nick (coming down from Derby) and Mark (coming from London), plus a friend Gemma. That turned out to be a great ride through lovely country roads and finishing with a nice BBQ afterwards.

Gemma, Kev, Juli, Jon, Mark P, Nick, Mark H, Sue
NightriderTF-3
Our first night ride last Friday
Tim, Jon, Kev, Sue
Nightrider-TF-5

#DblogWeek 2014 Day 7 – My Favourite (#DblogWeek) Things

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dblog week 2014Sunday’s topic: As we wrap up another Diabetes Blog Week, let’s share a few of our favourite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!

Dblogweek imageAll of the newest things I’ve found and loved have come from #DBlogWeek itself.

I love how some people have starting blogging because of #DBlogWeek and they’ve made such great starts I hope they continue. I’d like to single out Diane for this and her brand new blog: “My 1st ever Blog”. Kate too had only blogged twice before launching into a full week of blogging for #DBlogWeek: katet1d’s Blog.

I love how some others who’d blogged a little before have really gone for it this week. For this I’ll single out Jules who’s had a pretty crap time recently but is always full of fun and laughter and this comes through in her blog, especially the line in Mantras and More: ‘I’ve got the wrong mirror in my house. Mine belongs to a dowdy middle aged chubster, not me!‘. That had me giggling for a while, mainly because I share the same mirror problems 🙂

I’ve found a renewed zest for blogging. The early Circles of Blue articles were hard to write as they dealt with diagnosis, but as hard as they were I felt better by writing them. More recently I’ve just been reporting on events/products and whilst some of these – especially the Accu-chek Insight pump page – have turned out to be my most visited pages writing them didn’t give me much satisfaction. I think it’s fair to say this week has been a revelation for me.

I think I may write the odd poem too. I can’t tell you how nervous I was to release Tuesday’s poem “A Childhood All Gone” but it turned out to be the single-most favourited, retweeted and commented on article I’ve written. I spent all day apologising for making people cry – even though they told me I didn’t need to – and I’ve had people ask to be able to print it out for their clinic – of course you can – for others to read. I was pretty much overwhelmed the whole day. The last person who probably read it was Amy herself; she approved…phew!

Lastly, I’m amazed by Karen Graffeo. Not only has she grown #DBlogWeek to 200 worldwide bloggers, she seems to find time to read as many of the blogs as possible and comment on them, giving praise and encouragement. Here’s a couple she left me.

  • Thank you for giving me a glimpse of things my parent’s kept hidden from me. I think all parents of kids with diabetes are amazingly strong and I admire you. on Day 3 – What Gets Me Down.
  • I cried pretty much all the way through this. Parts of it reminding me of myself being diagnosed at age 11. But I love the end – how you are all stronger and no longer alone on Day 2 – A Childhood All Gone.

dblog week 2014

#DBlogWeek2014 Day 6 – Saturday Snapshots

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dblog week 2014Saturday’s topic:Back for another year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

It’s quite an easy one this. It was taken yesterday as my thirteen year old daughter Amy took to the stage with other older teenagers to talk about the care they receive, transition and what their ideal service would be. I’m immensely proud of Amy for doing this, it’s not something I would fancy doing.

Lilly Diabetes Conference

If you want to read about the event yesterday it’s all in here: Amy’s Chat Show at the National Paediatric Diabetes Team Meeting.

dblog week 2014